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Journal of Pain and Symptom Management
Vol. 22 No. 3 September 2001
Original Article
Patient-Focused, Family-Centered End-of-Life Medical Care: Views of the Guidelines and Bereaved Family Members Joan M. Teno, MD, MS, Virginia A. Casey, PhD, MPH, Lisa C. Welch, MA, and Susan Edgman-Levitan, PA Center for Gerontology and Health Care Research (J.M.T., L.C.W.) and Department of Sociology (L.C.W.), Brown University, Providence, Rhode Island; Department of Community Health (J.M.T.), Brown University School of Medicine, Providence, Rhode Island; and The Picker Institute (V.A.C., S.E.-L.), Boston, Massachusetts, USA
Abstract A fundamental barrier to improving the quality of medical care at the end of life is the lack of measurement tools. The Toolkit of Instruments to Measure End of Life Care (TIME) aims to fill that void by creating measurement tools that capture the patient and family perspective. To develop a conceptual model for a retrospective survey of bereaved family members that incorporates both professional and family perspectives on what constitutes good care at the end of life, a qualitative literature review of existing professional guidelines and six focus groups with bereaved family members from acute care hospitals (n 2), nursing homes (n 2), and hospice/VNA home health services (n 2) was performed. The focus groups were held in Arizona, New York, and Massachusetts and included 42 bereaved family members/friends contacted 3–12 months from the time of patient’s death. Domains of care that define quality end-of-life care were defined. Focus group participants defined high quality medical care as: 1) providing dying persons with desired physical comfort; 2) helping dying persons control decisions about medical care and daily routines; 3) relieving family members of the burden of being present at all times to advocate for their loved one; 4) educating family members so they felt confident to care for their loved ones at home; and 5) providing family members with emotional support both before and after the patient’s death. The qualitative literature review yielded similar results, except that the prof ssional guidelines did not mention the advocacy burden felt by families. These two sources provided the foundation for a conceptual model of patient-focused, family-centered medical care and a new tool for surveying bereaved family members. Views of bereaved family members’ stories and professional guidelines help to identify key domains of quality of end-of-life care. A new survey instrument provides a way to incorporate the perspectives of bereaved family members in measuring the quality of end-of-life care. J Pain Symptom Manage 2001;22:738–751 © U.S. Cancer Pain Relief Committee, 2001. Key Words Dying, quality of care, guidelines Address reprint requests to: Joan M. Teno, MD, MS, Center for Gerontology and Health Care Research, Brown University, 167 Angell Street, Box G-HLL, Providence, RI 02912, USA. Accepted for publication: April 27, 2001. © U.S. Cancer Pain Relief Committee, 2001 Published by Elsevier, New York, New York
Introduction Dying is a sentinel time period.1 As stated so movingly by Dame Cicely Saunders, “How one dies remains in the memories of those who live 0885-3924/01/$–see front matter PII S0885-3924(01)00335-9
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on.” Quality end-of-life care needs to consider both the patient and family perspectivesa on what constitutes good care. As one dies of a serious, progressive illness, the definition of quality care tends to change, at least in some respects.2 For example, preserving functional status is very important for a 42-year-old person suffering from a myocardial infarction; however, this may not be as true for the 70-year-old person dying of metastatic colon cancer. As one dies, what was once important may become less so, and other things once ignored may take on an even greater significance. The Institute of Medicine defines quality of care the degree to which health services increase the likelihood of desired health outcomes and are consistent with current professional knowledge.3 The development of a conceptual model for defining and measuring the quality end-of-life care should be informed by both professional knowledge (as reflected by professional guidelines that are based on both expert knowledge and judgment) and the consumer values (as expressed by the dying person and their family members). Previous efforts to develop conceptual models of quality of end-oflife care have relied on either expert opinion4–8 or qualitative data collected from seriously ill, dying persons9 or bereaved family members.10–12 One important barrier to improving the quality of end-of-life care is the lack of valid and reliable measurement tools to evaluate care as perceived by patients and families. Our goal was to develop a Toolkit of Instruments to Measure End of Life Care13,14 that includes tools informed by consumer perspectives on the quality of care. Two multidisciplinary conferences of experts14,15 outlined a research agenda for constructing a retrospective, bereaved-family interview and a prospective-patient interview that reflected assessments of views of consumers (i.e., dying persons and those who care for them), as well as experts. This article focuses on the family interview. Our first step in constructing the family interview instrument was a qualitative literature review of existing professional statements (i.e., guidelines, positive statements, or conceptual aFor our purposes, “family” is an inclusive term. It encompasses all people—whether or not they are blood relatives—with whom the patient has a very close or intimate relationship.
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models) to identify aspects or domains of quality end-of-life care. We then conducted focus groups with bereaved family members. With the information gathered from these two activities, we developed a conceptual model to guide the construction of an instrument to survey bereaved family members.
Methods Qualitative Literature Review of Expert Opinion The purpose of the qualitative literature review was to identify domains that professional guidelines and other statements identified as important to elements of quality end-of-life care. We used three strategies to locate these statements. First, we conducted a Medline search for the period 1986 through 1999 using the key words dying or terminally ill and guidelines or standards. Second, we contacted representatives of leading organizations involved with hospice, palliative care, care for older persons, and pain management to locate guidelines or similar expert statements on quality end-of-life care. Third, we obtained further references from guidelines identified through the first two strategies. Two of the authors (JMT and LW) reviewed published guidelines and other statements. Each reviewer completed an independent assessment of each statement to identify domains with areas of disagreement resolved by discussion. The goal in assessing the statements was not to identify differences in quality of care by setting or type of professional or service but rather to look for common themes.
Focus Groups with Bereaved Family Members A focus-group discussion is a qualitative data gathering technique where a trained moderator uses a structured process to direct the discussion and interaction of participants.16 Moderators do not, however, press groups to reach consensus. Instead, the emphasis is on listening and letting each person tell their story. Focus group research is especially useful in helping people productively discuss and give their views on complex issues—such as the quality of care at the end of life. Research Questions. In the focus groups, we sought answers to the following research questions:
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• What do family members know about the quality of care of dying patients? • What time period(s) is/are family members able to report on? • What can they tell us about the last week or last month of life? • How do family members reach conclusions about quality of care?
Recruitment of Focus Group Participants. Between January and April 1999, we conducted a total of 6 focus groups with bereaved family members or friends of someone who had recently died under the care of a hospice, hospital, nursing home, or non-hospice Visiting Nurses Association agency. Groups included 2 in Arizona, 3 in Massachusetts, and 1 in New York. Each focus group consisted of family members of decedents associated with one facility or service, and the recruitment process differed only slightly by site. We contacted family members between three months to slightly over one year from the time of death. In each case, we sought to recruit the family member who was involved most closely in medical decision-making and was the most knowledgeable about the circumstances of the patient’s death. Previous research on interviewing bereaved family members has demonstrated that this type of interview or discussion disturbs very few people. Our post hoc focus group evaluations confirmed this. Bereaved family members received their first contact about the study in a letter that described the study and how to participate. The letter came from the organization responsible for the patient’s care at the time of death. In all instances, bereaved family members could refuse contact with the study team either by returning a postcard or by making a telephone call. Once study staff received a list of possibly willing participants, follow-up recruitment calls were made using a standard script. Once again, family members were given the option to refuse participation. Those still interested received a confirmation letter with information on the time and site of the focus group session. Study staff made reminder calls 1–2 days prior to the group meeting. Participants received an honorarium of $50 and reimbursement for travel and parking expenses.
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Focus Group Process. Study staff developed a moderator’s guide to encourage consistency in approach across the 6 focus groups. In general, the sessions began with an explanation of quality of care at the end of life. The sessions then moved to an open-ended format that allowed people tell their stories and give their views. The sessions concluded with a more focused discussion directed by the moderator following our guide. The focus groups were audiotaped and videotaped, and an outside vendor transcribed the audiotapes. Participants received a brief mail-back survey approximately one week after the session to evaluate their experiences. Analytic Strategy. A thorough qualitative analysis of a focus group considers words (thoughts), tone, context, non-verbal cues, and the internal consistency, frequency, extensiveness, intensity, and specificity of responses.16 Two study investigators (JMT, VAC) independently reviewed handwritten notes, videotapes, and transcripts from the 6 sessions. Using a grounded theory approach17 each investigator developed a list of attributes and themes that family members reported as important to defining end-of-life care. The investigators compared their results and resolved areas of disagreement by discussion.
Results Qualitative Literature Review of Expert Opinion A total of 861 potential articles were identified based on our chosen search strategy. Based on review of abstracts and full-text documents, we found 15 that included guidelines, standards, or expert opinions on elements of quality care at the end of life.5,18–31 We also reviewed the reference sections of these guidelines as well as contacted professional organizations to identify additional sources of expert opinions. From these references and the professional organizations, we identified an additional 15 guidelines, standards, or expert opinions.1,4,6–8,32–41 Table 1 summarizes the 14 domains that were noted by more than 50% of the guidelines reviewed as being essential to the provision of quality end-of-life care. While the guidelines offered somewhat different definitions of the domains, we provide a working definition that attempts to synthesize common
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Table 1 Summary of Domains Idnetified in 30 Sets of Quality of Care Guidelines and Expert Opinion Domain
Sources Identifying Domain (n 30, with citations)
Definition
Physical well-being Psychological wellbeing Autonomy: decisionmaking Satisfaction/patientcentered care Satisfaction/familycentered care
Patient’s pain/symptom management (includes “safe and comfortable dying”7) and patient’s physical function Patient’s experience with a range of emotions, from happiness and peacefulness to depression and anxiety (includes “pyschosocial” issues around dying and grief27) Patient’s sense of the right to choose or refuse treatment(s) and setting(s) (includes “personal control”37) Patient’s view of care needs being assessed and satisfactorily met (includes enabling patient’s own maximum potential29) Family members’ and loved ones’ care needs as part of the care for the patient being assessed and satisfactorily met
n 30 (100%) Citations: 1,4–8,18–41 n 28 (93%) Citations: 1,4–6,8,18–39,41
Smooth transitions among different types and locations of care that maintain consistency, continuity, and coordination among different health care professionals and others involved in the patient’s care (includes “consistency and perseverance,”21 “continuing care,”20 “interdisciplinary team conferencing”7) Patient’s ability to find meaning in life and in the impending loss of the physical self (includes “spiritual and existential beliefs,”6 “self-determined life closure,”7 “spirituality and existential meaning,”19 pastoral counseling as care option,37 “existential distress”21) Patient’s ability to connect with others, spend time with significant people, say all that the patient wants to say, gain closurea (includes “promoting wellness,”7 peer support groups37, and social support23) Patient’s knowledge of and sense of the right to complete advance directives and/or state preferences for future medical care Health care workers’ attention to loved ones’ bereavement experiences, both anticipatory and post-death Patient and family’s fair access to types and locations of care, regardless of financial considerations, provider biases, or inappropriate regulatory barriers (includes economic and regulatory barriers,4 concerns about justice24,37) Patient’s sense of being valued as a person, of not being a burden, of being attractive, of maintaining an acceptable body imagea Informal caregiver’s physical and emotional experience with providing care (includes respecting dignity of caregiver4,36) Patient and family’s concern with financial costs of care
n 21 (70%) Citations: 1,4–8,19–22,25–27,29,32–38
n 24 (80%) Citations: 1,4,5,7,8,18,21,23–25,27–39,41 n 22 (73%) Citations: 1,4–8,19,21,22,24,25,27–32,34–36,38,39 n 21 (70%) Citations: 4–8,18,19,21,22,24,25,27,28,30,31,34– 37,39,40
Coordination and continuity of care
Spirituality and transcendence
Social well-being
Autonomy: advance care planning Grief and bereavement Access to care
Personal dignity Caregiver well-being Financial impact aDefinition
n 21 (70%) Citations: 1,4–8,19,21,23–25,27,30,32–37,39,41
n 20 (67%) Citations: 4–8, 19–24, 27–30, 32, 34–37 n 19 (63%) Citations: 4–6,8,18,21,23,26,27,30–36,38,39,41 n 19 (63%) Citations: 1,4–8,18–21,23,25–30,35,38 n 18 (60%) Citations: 1,4–6,8,18,19,23–26,31,33–37,40 n 17 (57%) Citations: 1,4,5,18,21,23–29,31,34,36,38,39 n 16 (53%) Citations: 1,4–8,21,26,29,31,33–38 n 16 (53%) Citations: 1,4–7,18,19,22,26–28,31,33,35,37,40
of the domain titled “Social well-being” draws from Stewart et al.5
themes across the guidelines. That is, some elements mentioned by the professional guidelines were described in somewhat different ways, but they clearly reflected several common underlying concepts. For some domains, the proposed definition was clear and consistent across sources. For example, all sources noted the importance of providing the dying person with their desired level of pain and symptom management. In some cases, the guidelines were less clear about the definition of a concept (e.g., spirituality) or did not link a concept to the obligations of
health care providers or others who serve dying patients and their families. Most experts recognized that quality care encompasses the needs of both patients and those close to them. For example, more the half of the sources mentioned the following four domains: 1) family-centered care and satisfaction (70%); 2) grief and bereavement, including that which occurs before as well as after a patient’s death (63%); 3) financial impact on both patient and family (53%); and 4) informal caregiver well-being, including both positive and negative experiences (53%).
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Focus Groups with Bereaved Family Members A total of 42 persons (average age 61, 70% female, 17% African American, 13% multiracial) participated in the 6 focus groups. All but 2 participants were close family members, including 14 surviving spouses and 26 children or parents. Five major themes emerged from the experiences shared by the family members during the six focus groups. The family members believed that quality end-of-life care: 1. Provides dying persons with desired physical comfort 2. Helps the dying person take control of decisions about medical treatment and daily routines 3. Relieves family members of the burden of feeling that they must be present at all times to advocate for the best care of their loved ones 4. Educates the family members so they feel confident in caring for their loved ones at home 5. Provides family members with emotional support both prior to and after the patient’s death For each of these themes, we provide illustrative narratives and quotations as examples. We have slightly edited the quotations and removed or changed some information that might identify specific individuals.
1. Providing Desired Physical Comfort. For focus group participants, providing the desired level of physical comfort was paramount to the quality of care provided by health care professionals to a dying family member. Although none of the focus group participants relayed a tragic story of untreated, horrendous pain, many echoed the widow who said that her husband’s biggest concern was untreated pain. In terms of my husband, I know what was most important to him was to be free of pain. He was being cared for if he would not be in terrible pain. Family members stressed the importance of health care providers anticipating needs for physical comfort and responding quickly to their reports of pain.
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During those last days . . . the nurses would come in at least every 15 minutes. They’d ask, “Is everything okay? Do you need anything?” We’d push the button, and they would be there. 2. Achieving Control over Everyday Decisions and Shared Control Over Treatment Decisions. Family members reported that having control of care decisions was very important to them and their loved one. Both dying persons and their families should be involved in choices that range from health care decisions (such as resuscitation) to everyday matters such as when to get out of bed. She died at the care center. She was a nocode. That was her choice, but also to be taken care of when she needed to be taken care of. She was in the care center for a full month with a full code on her records. You must insist that you get to see their medical records. You have a right to do that. Control was defined not only in terms of medical decisions but also as more mundane daily choices that may affect the quality of life and provide some control to people who no longer can control many elements of their life. For example, such daily choices may include going outside to a patio in a nursing home or choosing when to bathe. For patients and families making decisions, information and communication were important. Participants made clear that physicians, in particular, play a central role in communicating information in a timely, full, and compassionate manner. You have to communicate with your doctor, and if you can’t communicate with them, then you’re with the wrong person. You have the wrong physician. You have to be able to communicate; this is what I think. Let’s come to a joint decision, but you have to be able to talk to them. If you can’t talk to them, then you’re going to the wrong doctor. You need to change doctors. That’s my feeling. I think that was key to me dealing with my father’s death was the degree to which information was shared with me, and the timeliness of the sharing, and perhaps the compassion with which that was communicated.
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Some family members indicated that they felt abandoned in the decision-making process. It was as if the burden of decision-making was solely theirs rather than a shared process with doctors, nurses, and others providing care.
noy me if I went to the nurse’s station and they were busy, and they wouldn’t even look up, but I would say “Excuse me, excuse me, I have a question” or “I need some help with something.”
And you are making all the decisions and in such an emotional state and you are hoping and praying you are making the right decisions, even though they’ve signed everything. The reality of making those decisions is something that you have to live with, always.
Many of the families of patients who died in hospitals and nursing homes spoke of this constant burden of advocacy. They feared that basic needs would be neglected if they had to leave their loved ones alone.
Towards the end . . . everything is on you. It’s your responsibility to make all the decisions and to hope that they are comfortable and that you are making the right decisions. All of her medical care, all those decisions had to be made by me, and if I made the wrong decision then I was going to be the one that had to suffer as well. 3. Easing the Family’s Burden of Advocacy for Quality of Care. Except for those served by hospices, family members spoke of the burden that resulted from their self-imposed role of advocating for the best care for their loved ones. One family member felt she had the responsibility but not the “equal power” to demand quality medical care. I think it’s a very complicated situation to be an advocate in a world where you are not an equal. I felt a strong sense of advocacy for her, and no, I’m not a medical person. Again, I have some common sense, and I do have a heart. Some of my questions used to be somewhat like “Well if you don’t do that, what does that mean?” I would make them answer because I think you’re right. You need to because sometimes they would act hurried, and they would act rushed, and they would look at their watch. I made a conscientious decision that I don’t really care what you have to do. It really is not my problem, and I’m sympathetic to everyone in this hospital, but my concern right now is this patient here in this bed, and I would make them answer questions. I would call them, and I would ask for pager numbers, and I would ask how I could reach somebody. Sometimes it used to an-
And you are there when she is calling the nurse and the nurse doesn’t respond. And you are thinking if they are not doing it while I’m here, being the advocate, what are they doing when I’m not here? And I was there most of the day, but I didn’t sleep there at night . . . [Another Family member replies] . . . That’s the strongest word you’ve used. Everyone needs an advocate, no matter what your situation is. We found hospice was our advocate. I gave up fighting when hospice came in. 4. Educating Family Members to Increase Their Knowledge and Confidence. For those persons dying at home, family members spoke of their own important role in end-of-life care. They also spoke of the fears that often accompanied the role. Many believed they were not adequately prepared or trained about what they should expect and how to appropriately perform such important tasks as giving medications. I’m glad I did it [keep her at home] but I think towards the end . . . giving the medications and upping the medications seemed so fast. All of the sudden now she is on all this morphine and all this whatever it is. And that kind of bothered me too. It really did. Because it was like, my God, I’m giving her this stuff. Am I giving her too much? I’m not a trained medical person. I, being the caregiver, I was scared to death. I mean I’m not a nurse. I don’t have that experience. 5. Providing Emotional Support Before and After the Patient’s Death. Participants in these focus groups expressed the need for more emotional support both prior to and after the patient’s
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death. Caregiving, while often rewarding, can be taxing on family members. Thus, they often needed the emotional support similar to that available to patients. Participants also described the need for information on the impact that a person’s life-threatening illness might have on their family relationships. You know the one thing that I would have expected that we never received was—you know once my husband was diagnosed and we were sent home. There was a psychologist there, and she was wonderful, but it’s focused on the patient, and as the caregiver I didn’t have a clue. And to go home and you’ve got somebody that needs you, and you’re dealing with emotions, and illness, and family, and trying to maintain your own life. I mean I was working full-time, and you can’t do it. I think the greatest fear for me was every time we left the hospital because when he was in the hospital at least I knew he was being cared for. But just the whole communication and caregiving aspects of it . . . Nobody really sits you down and let’s you know what to expect and how you can help . . . What’s it going to be like on your relationship and those kinds of things? We didn’t get that. Family members and other loved ones not only want to be informed about what to expect while the patient is dying but also need help with the process of bereavement. I was not prepared for how it actually went. I was not prepared for my emotions. And afterwards, actually I did go to several bereavement things. They were beneficial. I needed to vent. When my wife died, it was in hospice. They were so sympathetic, probably for two or three months after my wife passed away they would be calling me wanting to know if I was okay and if my children were okay. Would I like to come in and talk to somebody? Grief counseling, things such as that. And possibly [the nursing home] could take a lesson from hospice and care for those who are left behind. Additional Concerns of Focus Group Participants. Family members noted several other concerns. Some wanted health care institutions to facilitate the involvement of a spiritual leader, but this needed to be done in a sensitive manner
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and not forced upon them. One participant said, “I don’t think it [chaplain services] should be pushed down people’s throats.” Family members of persons dying with home care services also stressed the importance of continuity of care, for example, having the same care provider over the course of the illness. Finally, family members expressed concerns that their frail and dependent loved ones be treated with dignity and respect. Respect and dignity to me should be the most and best that we can give anyone that is being dependent upon someone else to care for them. That was not given. For them to feel secure in their surroundings.
Patient-Focused, Family-Centered Medical Care Based on our review of expert opinions and our analysis of focus group results, we developed a conceptual model of quality of care at the end of life. This model then guided the construction of a survey instrument to measure family members’ views on the quality of end-of-life care. The fundamental premise of the model is that care at the end of life must be simultaneously patient-focused and family-centered. Consolidating themes from the focus groups and literature review, we defined five central elements of patient-focused, family-centered health care. Such care: • Provides patients with desired physical comfort and emotional support • Promotes shared medical decision-making • Provides health care and related services that are focused on the needs and values of the dying person • Attends to the needs and values of those who care for and love the dying person • Coordinates health care and related services to smooth patient and family transitions among sites and types of service. Table 2 proposes definitions for each of these domains. Based on this conceptual model, we developed a survey instrument for bereaved family members. To capture information relevant to each domain of quality, the instrument includes questions that ask family members to report on what happened to the patient and questions that ask them to rate the quality of care provided. Table 3 lists the survey questions and the domains to which they relate.
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Table 2 Domains of Patient-Focused, Family-Centered Care for Patients and Families Facing Serious, Progressive Illness Domain of Care
Definition
Provide desired level of physical comfort and emotional support for patient
Patients should receive their desired level of physical comfort and emotional support
Promote shared decision-making
Patients with serious, progressive illnesses and their family members should be adequately informed about the disease, its prognosis, their palliative and other care options (including the likely benefits and burdens), and the role of advance care planning.
Focus on the individual
Health care professionals should treat patients with dignitiy, sensitivity, kindness, and respect for their individual needs and preferences for medical and other care. Health care professionals should also attend to the patient’s needs for closure of important relationships, spirituality, and transcendence in a sensitive manner.
Attend to the needs of the family
Before and after a loved one’s death, family members and close friends should be provided with information, training, and emotional support to help them prepare for and cope with the psychological, practical, and spiritual demands they may face.
Ensure coordination of care
A clearly identified professional responsible for overseeing a multidisciplinary team that provides consistent and coordinated care across different settings and service categories should lead care for patients and families.
Discussion A fundamental barrier to improving the quality of care for the dying is the lack of measurement tools that capture the patient and family perspective on the quality of end-of-life care. Our goal is to develop both prospective and retrospective survey tools that measure both the dying person’s and family member’s perspectives on the quality of care. Although chart reviews42,43 and interviews with staff44 provide relevant information on the care provided to dying people and their families, only the dying person and their family member can report accurately on certain important aspects of care—such as whether medical decisions reflected informed patient preferences or whether the dying person received their desired level of pain control.13 Unlike previous efforts to develop conceptual models,4–6,26 we have relied on both expert opinions and views from bereaved family members to develop a model that is the basis for designing the AfterDeath Bereaved Family Member Survey. Both experts and focus group participants provided important insights into shaping the conceptual model. Although experts and professional guidelines often used more complex language than focus group participants (e.g., “physical well-being” rather than “physical comfort”), both agreed on important areas. Both emphasized providing the desired level of physical comfort and honoring patients’ preferences. Yet family members emphasized that patients’ autonomy included not only treat-
ment decisions (e.g., about use of antibiotics) but also making everyday decisions, such as when a person got out of bed or had a bath in a nursing home. Expert guidelines endorse shared decision-making, but family members sometimes felt that they alone were responsible for decisions at the end of life. One focus group participant best stated this concern: “Towards the end . . . everything is on you . . .” Family members often spoke of the burdens of advocating for the best care of their loved ones. They found this task difficult in a “medical world” that they did not understand and in which they did not feel equal with health care providers. Often, focus group participants feared what might happen when they were not present to demand even the very basic aspects of care, such as bathing or responding to a call light. Clearly, the family members’ stories provide a vivid sense of their concerns. Still, professionals increasingly recognize that medical care must recognize and meet consumer expectations. More than 75% of expert sources evaluated here acknowledged the importance of patient and family preferences and values. Our conceptual model of patient-focused, family-centered medical care proposes that health care at the end of life must be focused on the patient, but it also acknowledges the important role of family members. Consequently, a key goal of end-of-life care is to enhance the quality of life of both patients and family members.1 As shown in Table 4, two of our domains—
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Table 3 Domains and Selected Corresponding Survey Questions Domain Provide desired level of physical comfort and emotional support for patient Physical comfort - D12a, D15, D15a, D16b
Selected Corresponding Questions D12a. In those last X days, did (his/her) doctor or the medical staff who cared for (him/her) at [LAST PLACE] tell you about how (his/her) pain would be treated, in a way that you could understand? [ ] YES [ ] NO D15. In the last X days while (he/she) was at [LAST PLACE], did [PATIENT] receive too much, too little, or just the right amount of medication for (his/her) pain? [ ] TOO MUCH [ ] TOO LITTLE [ ] RIGHT AMOUNT D15a. In the last X days while [PATIENT] was at [LAST PLACE], was there ever a time when one doctor or nurse said thing about treatment of (his/her) pain and another said something else? [ ] YES [ ] NO D16b. How much help in dealing with (his/her) breathing did [PATIENT] receive — less than was needed, or about the right amount? [ ] LESS THAN WAS NEEDED [ ] RIGHT AMOUNT
Emotional support - D17b
D17b. How much help in dealing with these feelings [of anxiety or sadness] did [PATIENT] receive—less then was needed or about the right amount? [ ] LESS THAN WAS NEEDED [ ] RIGHT AMOUNT
Rating - F3
F3. (In the last X days of (his/her) life) how well did those taking care of [PATIENT] at [LAST PLACE] make sure (his/her) symptoms were controlled to a degree that was acceptable to (him/her)? [ 0 1 2 3 4 5 6 7 8 9 10 ]
Promote shared decision making Communication/decision making - C1a, C1b, C1c, D19
C1a. In those last X days, was there ever a problem understanding what any doctor at [LAST PLACE] was saying to you about what to expect from treatment? [ ] YES [ ] NO C1b. In those last X days, did you feel that the doctors you talked to at [LAST PLACE] listened to your concerns about [PATIENT]’s medical treatment? [ ] YES [ ] NO [ ] HAD NO CONCERNS C1c. In those last X days, how much information did the doctors provide you about [PATIENT]’s medical condition — would you say less information than was needed, more was needed, or just the right amount? [ ] LESS THAN WAS NEEDED [ ] MORE THAN WAS NEEDED [ ] JUST THE RIGHT AMOUNT D19. In (his/her) last X days [PATIENT] was at [LAST PLACE], was there ever a decision made about (his/her) care without enough input from (him/her) or (his/her) family? [ ] YES [ ] NO
Advance care planning - D2, D3, D4
D2. To the best of your knowledge, did [PATIENT]’s doctor or the medical staff who cared for (him/her) at [LAST PLACE] speak to (him/her) or you about (his/her) wishes about medical treatment? [ ] YES [ ] NO D3. Did (his/her) doctor or the medical staff who cared for (him/her) at [LAST PLACE] speak to (him/her) or you about making sure (his/her) care was consistent with (his/her) wishes? [ ] YES [ ] NO D4. In [PATIENT]’s last X days at [LAST PLACE], was there any medical procedure or treatment that happened to (him/her) that was inconsistent with (his/her) previously stated wishes? [ ] YES [ ] NO
Rating - F2
Focus on individual Control and respect - D20a, D20b, D20c, D21, D22, D23, D24, D25, E2
F2. In the last X days of (his/her) life, how would you rate how well those taking care of [PATIENT] at [LAST PLACE] provided medical care that respected (his/her) wishes? [ 0 1 2 3 4 5 6 7 8 9 10] D20. In (his/her) last X days at [LAST PLACE], was [PATIENT] able . . . a. . . . to wake up when (he/she) wanted to?[ ] YES [ ] NO [ ] INAP b. . . . to eat when (he/she) wanted to? [ ] YES [ ] NO [ ] INAP c. . . . to choose what time to be bathed? [ ] YES [ ] NO [ ] INAP D21. In those last X days, how often were [PATIENT]’s personal care needs—such as bathing, dressing, and changing bedding— taken care of as well as they should have been—would you say always usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER (continued)
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Table 3 Continued Domain
Selected Corresponding Questions D22. In the last X days while [PATIENT] was at [LAST PLACE], how often was (he/she) treated with respect by those who were taking care of (him/her)—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER D23. In those last X days, how often was [PATIENT] treated with kindness by those who were taking care of him/her—always, usually, sometimes, never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER D24. During [PATIENT]’s last X days, was there enough help available to meet (his/her) personal care needs, like bathing, dressing, feeding, and going to the bathroom? [ ] YES [ ] NO D25. During those last X days, was there enough help with medications and getting dressings changed? [ ] YES [ ] NO E2. In the last X days at [LAST PLACE] how often did you have concerns about [PATIENT]’s bathing, dressing, and changing bedding—being met when you were not there—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER
Closure - D32, D33, D34, D35
D32. At the time of (his/her) death, with respect to end-of-life paperwork, such as a will and up-to-date information on insurance and bank accounts, how (organized/prepared) was [PATIENT]—extremely, very, somewhat, a little, or not at all? [ ] EXTREMELY [ ] VERY [ ] SOMEWHAT [ ] A LITTLE [ ] NOT AT ALL D33. At the time of (his/her) death, how comfortable was [PATIENT] with the way relationships were left with friends and family—extremely, very, somewhat, a little, not at all? [ ] EXTREMELY [ ] VERY [ ] SOMEWHAT [ ] A LITTLE [ ] NOT AT ALL D35. At the time of (his/her) death, how at ease was [PATIENT] with respect to spiritual or religious matters—very much, somewhat, a little, or not at all? [ ] EXTREMELY [ ] VERY [ ] SOMEWHAT [ ] A LITTLE [ ] NOT AT ALL
Rating-F4
Attend to the needs of the family Family confidence in their knowledge and skills - D26b, D27b, D28b, D29b (only at home)
F4. In the last X days of (his/her) life, how well did those taking care of [PATIENT] at [LAST PLACE] make sure that [PATIENT] died with dignity—that is, died on (his/her) own terms? [ 0 1 2 3 4 5 6 7 8 9 10] D26b. How confident were you that you knew what to expect while [PATIENT] was dying—very confident, fairly confident, or not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT D27b. How confident were you that you knew what to do at the time of death—very confident, fairly confident, not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT D28b. How confident were you that you understood about the medicines that would be used to manage (his/her) pain, shortness of breath, or other symptoms—very confident, fairly confident, or not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT D29b. [only if at home] How confident did you feel about taking care of [PATIENT] at home—very confident, fairly confident, not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT
Family emotional support - E6, E7, E8
E6. During [PATIENT]’s last X days, how much support in dealing with your feelings about [PATIENT]’s death did the doctors, nurses, and other professional staff taking care of (him/her) provide you—less support than was needed or the right amount? [ ] LESS THAN WAS NEEDED [ ] RIGHT AMOUNT E7. During those last X days, did a doctor, nurse, or other professional staff taking care of [PATIENT] at [LAST PLACE] talk about how you might feel after [PATIENT’S] death? [ ] YES → Was it done in a sensitive manner? [ ] YES [ ] NO [ ] NO → Would you have wanted them to? [ ] YES [ ] NO E8. In the last X days, did a doctor, nurse, or other professional staff taking care of [PATIENT] at [LAST PLACE] suggest someone you could turn to for help if you were feeling stressed? [ ] YES [ ] NO (continued)
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Table 3 Continued Domain Family spiritual support - E4, E4a, E4b
Selected Corresponding Questions E4. During the last X days while [PATIENT] was at [LAST PLACE], did someone talk with you about your religious or spiritual beliefs? [ ] YES [ ] NO E4a. Was this done in a sensitive manner? [ ] YES [ ] NO E4b. Did you have as much contact of that kind as you wanted in those last X days? [ ] YES [ ] NO
Rating - F5
Ensure coordination of care C1d, C2, D15a, D18
F5. In the last X days of (his/her) life, how well did those taking care of [PATIENT] at [LAST PLACE] do at providing emotional support for you and [PATIENT]’s family and friends? [ 0 1 2 3 4 5 6 7 8 9 10 ] C1d. In those last X days, how often did any doctor give confusing or contradictory information about [PATIENT]’s medical treatment—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER C2. In (his/her) last X days at [LAST PLACE], was there always a doctor in charge of [PATIENT]’s care? [ ] YES [ ] NO D15a. In the last X days while [PATIENT] was at [LAST PLACE], was there ever a time when one doctor or nurse said one thing about treatment of (his/her) pain and another said something else? [ ] YES [ ] NO D18. In those last X days, was there any problem with doctors or nurses not knowing enough about [PATIENT]’s medical history to provide the best possible care? [ ] YES [ ] NO
Inform and educate - D26, D26a, D27, D27a, D28, D28a, E1
D26. At any time while [PATIENT] was (in the hospital/in the nursing home/involved with the hospice/the VNA program) did you or your family receive any information about what to expect while (he/she) was dying? [ ] YES [ ] NO D26a. Would you have wanted (some/more) information about that? [ ] YES [ ] NO D27. At any time while [PATIENT] was (in the hospital/in the nursing home/involved with hospice/the VNA program) did you or your family receive any information about what to do at the time of (his/her) death? [ ] YES [ ] NO D27a. Would you have wanted (some/more) information about that? [ ] YES [ ] NO D28. At any time while [PATIENT] was (in the hospital/in the nursing home/involved with hospice/the VNA program) did you or your family receive any informaiton about the medicines that would be used to manage (his/her) pain, shortness of breath, other symptoms? [ ] YES [ ] NO D28a. Would you have wanted (some/more) information about the medicines? [ ] YES [ ] NO E1. In the last X days while [PATIENT] was at [LAST PLACE], how often were you or other family members kept informed about [PATIENT]’s condition—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER
Rating-F1
F1. In the last X days of (his/her) life, how well did the doctors, nurses, and other professional staff who cared for [PATIENT] at [LAST PLACE] communicate with (him/her) and the family about the illness and the likely outcomes of care? [ 0 1 2 3 4 5 6 7 8 9 10 ]
These and additional survey questions are available on the World Wide Web at http://www.chcr.brown.edu/pcoc/NEWVALIDATEDINSTRUM.HTM
“providing desired physical comfort and emotional support” and “promoting shared decision making”—are widely supported by previous expert guidelines and research with patients, families, and health care providers.
Two other domains—“focus on individual” and “attend to the need of the family”—are both similar to and different from previous models and qualitative research. The domain “focus on individual” responds to
Contributing to others Affirmation of the whole person Strengthening relationship Hopes and expectations Patients’ perceptions of care Spiritual and existential Spriritual well-being beliefs
Relieving burden Family well-being and perceptions Economic demands and caregiving demands
Completion
Focus on the individual, including closure, respect, and dignitiy of the patient Educating on what to expect Attend to the needs of the family for and increasing confidence in information, increasing their confidence providing care in helping with patient care, and providing emotional support prior to and after the patient death. Emotional support prior to and Coordination and continuity after the patient’s death of care Informing and educating Social relationships and support
Achieving sense of the dying Psychosocial well-being Effective and functioning grieving
Psychological and cognitive symptoms
Pain and symptom management Clear decision making
Providing desired physical comfort Achieving control over health care decisions and every day decisions Preparation for death Burden of advocating for quality medical care
Providing desired level of physical comfort and emotional support Promote shared decision making
Patient-Focused, Family-Centered End-of-Life Care
Safe and Receiving adequate pain and comfortable dying symptom management Physical well-being and Self-determined Avoiding inappropriate functioning life closure prolongation of the dying Overall quality of life
NHO Pathway7 IOM Approaching Death4 Emanuel and Emanuel6
Physical symptoms
Bereaved Family Members from the Current Study
New Proposed Conceptual Model of Patient-Focused, Family Centered Medical Care Patients, Families and Health Care Providers12 Patients with HIV Renal Failure on Dialysis and Nursing Home Residents46
Table 4 Comparison of Domains of Expert, Patients, Family Members, Health Care Providers, and New Proposed Model
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two specific concerns. First, focus group participants as well as experts noted the importance of “closure” for dying patients. Closure addresses social relationships, transcendence, and patients’ spiritual needs. It should be noted that participants voiced concern that spiritual needs be addressed in a sensitive manner that does not “force” the issue. Other studies of patients and families have noted the importance of “completion” (as noted by Steinhauser and colleagues12) or “strengthening relationships with loved ones” (as noted by Singer and colleagues45). Second, family members often voiced concern over how the patient was treated when they were not present. Many believed that they must be present at all times to advocate for good care. Family members’ self-imposed role of being the patient’s advocate was often viewed as burdensome. A driving concern was that their dying loved one be treated with dignity and kindness, which includes attending to the patient’s basic self-care needs as well as providing their desired level of control over everyday decisions. The domain of “attending to the needs of family” recognizes that family members are an important focus in measuring the quality of end-of-life care. Care of dying persons often relies on family members,46 who provide this care even if it results in a family member having to quit a job or defer education.47 Most experts recognized the importance of providing emotional support to family members before and after the patient’s death. In addition, Steinhauser and colleagues found that patients, families, and health care providers voiced a need for more information about what patients and family members could expect while the patient was dying.12 In contrast, our conceptual model responds to the voices of the focus group participants by emphasizing the importance of family members being provided with both information on what to expect and the skills necessary to help care for the patient at home. One family member stated this best: “you know what to expect, how you can help, and what you can expect.” We found that family members were concerned with not only information but also their competence in providing medical care for their dying loved one.
Strengths and Limitations Focus groups provide a means for indepth exploration of a complex topic—such as de-
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fining the quality of medical care. Focus groups are not designed to provide quantitative estimates of the family members’ priorities. Our recruitment efforts involved different geographic locations of the country with good representation of ethnic minorities in 3 of the 6 focus groups. Yet we conducted only 6 groups and, as with much qualitative data, our results are not generalizable to other populations. Unlike previous studies, though, we did recruit persons from diverse settings of care. Lastly, our study is strengthened by the fact that family members were not speaking of a hypothetical situation but rather were reflecting on their experiences with the medical care experienced by a close family member at the end of life.
Conclusion In comparing the perspectives of both family members and experts, we found many similarities in the ways they defined or viewed quality of care at the end of life. Both identified symptom management, shared decision-making, and emotional support prior to and after the patients’ death as important for quality end-oflife care. Family members, in addition to these domains, stressed the importance of dignified and respectful treatment of those who are dying. They wanted better information on what to expect and how they can help their dying relatives. A conceptual model of patientfocused, family-centered medical care was created and that model was used to write potential questionnaire items for bereaved family members. The validation of this instrument is described in separate article in this edition of Journal of Pain and Symptom Management.
Acknowledgments
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3. Lohr KN, ed. Medicare: a strategy for quality assurance. Washington, DC: National Academy Press, 1990. 4. Field MJ, Cassel CK, eds. Approaching death: improving care at the end of life. Washington, DC: National Academy Press, 1997. 5. Stewart AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 1999;17:93–108. 6. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet 1998;351(Suppl 2):21–29. 7. National Hospice Organization. A pathway for patients and families facing terminal illness: selfdetermined life closure, safe comfortable dying and effective grieving. Alexandria, Virginia: National Hospice Organization, 1997. 8. Ferris FD, Cummings I eds. Palliative care: towards a consensus in standardized principles of practice. Ottawa, ON, Canada: Canadian Palliative Care Association, 1995:53–54. 9. Singer PA, Choudhry S, Armstrong J, et al. Public opinion regarding end-of-life decisions: influence of prognosis, practice and process. Soc Sci Med 1995;41:1517–1521. 10. McSkimming S, Super A, Driever M, Schoessler M, Franey S, Fonner E Jr. Supportive Care of the Dying. Living and Healing During Life-Threatening Illnesses. Portland OR: Supportive Care of the Dying, June 1997. 11. Tyler B, Perry M, Lofton T, Millard F. American Health Decisions. The quest to die with dignity: an analysis of Americans’ values, opinions and attitudes concerning end-of-life care. Garrison, NY: American Health Decisions, 1997. 12. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med 2000;132: 825–832. 13. Teno JM. Putting the patient and family voice back into measuring the quality of care for the dying. Hosp J 1999;14:167–176. 14. Teno JM, Byock I, Field MJ. Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. J Pain Symptom Manage 1999;17:75–82.
Funded by the Robert Wood Johnson Foundation, Grant no. 038149.
15. Byock IR, Teno JM, Field MJ. Measuring quality of care at life’s end [editorial]. J Pain Symptom Manage 1999;17:73–74.
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21. Cherny NI, Coyle N, Foley KM. Guidelines in the care of the dying cancer patient. Hematol Oncol Clin North Am 1996;10:261–286.
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22. Donaldson MS, Field MJ. Measuring quality of care at the end of life. Arch Intern Med 1998;158:121–128. 23. Keay TJ, Fredman L, Taler GA, et al. Indicators of quality medical care for the terminally ill in nursing homes. J Am Geriatr Soc 1994;42:853–860. 24. Latimer E. Caring for seriously ill and dying patients: the philosophy and ethics. CMAJ 1991;144: 859–864. 25. Latimer EJ, Dawson HR. Palliative care: principles and pracice. Section of Palliative Care, Ontario Medical Association [see comments]. CMAJ 1993; 148:933–936. 26. Lynn J. Measuring quality of care at the end of life: a statement of principles [see comments]. J Am Geriatr Soc 1997;45:526–527.
38. American Medical Association Institute for Ethics. Elements of quality end-of-life care for patients in the last phase of life. In: caring to the end: conscientious end-of-life care can reduce concerns about care of the terminally ill. December 1997. Available at: www.ama-assn.org/sci-pubs/amnews/amn _97/edit1215.htm. 39. American Nursing Association. Position Statements: Promotion of comfort and relief of pain in dying patients; Nursing and the patient self-determination acts; and Foregoing nutrition and hydration. 1991. Available at: www.ana.org/readroom/position/ethics/.
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Journal of Pain and Symptom Management
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Original Article
Patient-Focused, Family-Centered End-of-Life Medical Care: Views of the Guidelines and Bereaved Family Members Joan M. Teno, MD, MS, Virginia A. Casey, PhD, MPH, Lisa C. Welch, MA, and Susan Edgman-Levitan, PA Center for Gerontology and Health Care Research (J.M.T., L.C.W.) and Department of Sociology (L.C.W.), Brown University, Providence, Rhode Island; Department of Community Health (J.M.T.), Brown University School of Medicine, Providence, Rhode Island; and The Picker Institute (V.A.C., S.E.-L.), Boston, Massachusetts, USA
Abstract A fundamental barrier to improving the quality of medical care at the end of life is the lack of measurement tools. The Toolkit of Instruments to Measure End of Life Care (TIME) aims to fill that void by creating measurement tools that capture the patient and family perspective. To develop a conceptual model for a retrospective survey of bereaved family members that incorporates both professional and family perspectives on what constitutes good care at the end of life, a qualitative literature review of existing professional guidelines and six focus groups with bereaved family members from acute care hospitals (n 2), nursing homes (n 2), and hospice/VNA home health services (n 2) was performed. The focus groups were held in Arizona, New York, and Massachusetts and included 42 bereaved family members/friends contacted 3–12 months from the time of patient’s death. Domains of care that define quality end-of-life care were defined. Focus group participants defined high quality medical care as: 1) providing dying persons with desired physical comfort; 2) helping dying persons control decisions about medical care and daily routines; 3) relieving family members of the burden of being present at all times to advocate for their loved one; 4) educating family members so they felt confident to care for their loved ones at home; and 5) providing family members with emotional support both before and after the patient’s death. The qualitative literature review yielded similar results, except that the prof ssional guidelines did not mention the advocacy burden felt by families. These two sources provided the foundation for a conceptual model of patient-focused, family-centered medical care and a new tool for surveying bereaved family members. Views of bereaved family members’ stories and professional guidelines help to identify key domains of quality of end-of-life care. A new survey instrument provides a way to incorporate the perspectives of bereaved family members in measuring the quality of end-of-life care. J Pain Symptom Manage 2001;22:738–751 © U.S. Cancer Pain Relief Committee, 2001. Key Words Dying, quality of care, guidelines Address reprint requests to: Joan M. Teno, MD, MS, Center for Gerontology and Health Care Research, Brown University, 167 Angell Street, Box G-HLL, Providence, RI 02912, USA. Accepted for publication: April 27, 2001. © U.S. Cancer Pain Relief Committee, 2001 Published by Elsevier, New York, New York
Introduction Dying is a sentinel time period.1 As stated so movingly by Dame Cicely Saunders, “How one dies remains in the memories of those who live 0885-3924/01/$–see front matter PII S0885-3924(01)00335-9
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on.” Quality end-of-life care needs to consider both the patient and family perspectivesa on what constitutes good care. As one dies of a serious, progressive illness, the definition of quality care tends to change, at least in some respects.2 For example, preserving functional status is very important for a 42-year-old person suffering from a myocardial infarction; however, this may not be as true for the 70-year-old person dying of metastatic colon cancer. As one dies, what was once important may become less so, and other things once ignored may take on an even greater significance. The Institute of Medicine defines quality of care the degree to which health services increase the likelihood of desired health outcomes and are consistent with current professional knowledge.3 The development of a conceptual model for defining and measuring the quality end-of-life care should be informed by both professional knowledge (as reflected by professional guidelines that are based on both expert knowledge and judgment) and the consumer values (as expressed by the dying person and their family members). Previous efforts to develop conceptual models of quality of end-oflife care have relied on either expert opinion4–8 or qualitative data collected from seriously ill, dying persons9 or bereaved family members.10–12 One important barrier to improving the quality of end-of-life care is the lack of valid and reliable measurement tools to evaluate care as perceived by patients and families. Our goal was to develop a Toolkit of Instruments to Measure End of Life Care13,14 that includes tools informed by consumer perspectives on the quality of care. Two multidisciplinary conferences of experts14,15 outlined a research agenda for constructing a retrospective, bereaved-family interview and a prospective-patient interview that reflected assessments of views of consumers (i.e., dying persons and those who care for them), as well as experts. This article focuses on the family interview. Our first step in constructing the family interview instrument was a qualitative literature review of existing professional statements (i.e., guidelines, positive statements, or conceptual aFor our purposes, “family” is an inclusive term. It encompasses all people—whether or not they are blood relatives—with whom the patient has a very close or intimate relationship.
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models) to identify aspects or domains of quality end-of-life care. We then conducted focus groups with bereaved family members. With the information gathered from these two activities, we developed a conceptual model to guide the construction of an instrument to survey bereaved family members.
Methods Qualitative Literature Review of Expert Opinion The purpose of the qualitative literature review was to identify domains that professional guidelines and other statements identified as important to elements of quality end-of-life care. We used three strategies to locate these statements. First, we conducted a Medline search for the period 1986 through 1999 using the key words dying or terminally ill and guidelines or standards. Second, we contacted representatives of leading organizations involved with hospice, palliative care, care for older persons, and pain management to locate guidelines or similar expert statements on quality end-of-life care. Third, we obtained further references from guidelines identified through the first two strategies. Two of the authors (JMT and LW) reviewed published guidelines and other statements. Each reviewer completed an independent assessment of each statement to identify domains with areas of disagreement resolved by discussion. The goal in assessing the statements was not to identify differences in quality of care by setting or type of professional or service but rather to look for common themes.
Focus Groups with Bereaved Family Members A focus-group discussion is a qualitative data gathering technique where a trained moderator uses a structured process to direct the discussion and interaction of participants.16 Moderators do not, however, press groups to reach consensus. Instead, the emphasis is on listening and letting each person tell their story. Focus group research is especially useful in helping people productively discuss and give their views on complex issues—such as the quality of care at the end of life. Research Questions. In the focus groups, we sought answers to the following research questions:
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• What do family members know about the quality of care of dying patients? • What time period(s) is/are family members able to report on? • What can they tell us about the last week or last month of life? • How do family members reach conclusions about quality of care?
Recruitment of Focus Group Participants. Between January and April 1999, we conducted a total of 6 focus groups with bereaved family members or friends of someone who had recently died under the care of a hospice, hospital, nursing home, or non-hospice Visiting Nurses Association agency. Groups included 2 in Arizona, 3 in Massachusetts, and 1 in New York. Each focus group consisted of family members of decedents associated with one facility or service, and the recruitment process differed only slightly by site. We contacted family members between three months to slightly over one year from the time of death. In each case, we sought to recruit the family member who was involved most closely in medical decision-making and was the most knowledgeable about the circumstances of the patient’s death. Previous research on interviewing bereaved family members has demonstrated that this type of interview or discussion disturbs very few people. Our post hoc focus group evaluations confirmed this. Bereaved family members received their first contact about the study in a letter that described the study and how to participate. The letter came from the organization responsible for the patient’s care at the time of death. In all instances, bereaved family members could refuse contact with the study team either by returning a postcard or by making a telephone call. Once study staff received a list of possibly willing participants, follow-up recruitment calls were made using a standard script. Once again, family members were given the option to refuse participation. Those still interested received a confirmation letter with information on the time and site of the focus group session. Study staff made reminder calls 1–2 days prior to the group meeting. Participants received an honorarium of $50 and reimbursement for travel and parking expenses.
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Focus Group Process. Study staff developed a moderator’s guide to encourage consistency in approach across the 6 focus groups. In general, the sessions began with an explanation of quality of care at the end of life. The sessions then moved to an open-ended format that allowed people tell their stories and give their views. The sessions concluded with a more focused discussion directed by the moderator following our guide. The focus groups were audiotaped and videotaped, and an outside vendor transcribed the audiotapes. Participants received a brief mail-back survey approximately one week after the session to evaluate their experiences. Analytic Strategy. A thorough qualitative analysis of a focus group considers words (thoughts), tone, context, non-verbal cues, and the internal consistency, frequency, extensiveness, intensity, and specificity of responses.16 Two study investigators (JMT, VAC) independently reviewed handwritten notes, videotapes, and transcripts from the 6 sessions. Using a grounded theory approach17 each investigator developed a list of attributes and themes that family members reported as important to defining end-of-life care. The investigators compared their results and resolved areas of disagreement by discussion.
Results Qualitative Literature Review of Expert Opinion A total of 861 potential articles were identified based on our chosen search strategy. Based on review of abstracts and full-text documents, we found 15 that included guidelines, standards, or expert opinions on elements of quality care at the end of life.5,18–31 We also reviewed the reference sections of these guidelines as well as contacted professional organizations to identify additional sources of expert opinions. From these references and the professional organizations, we identified an additional 15 guidelines, standards, or expert opinions.1,4,6–8,32–41 Table 1 summarizes the 14 domains that were noted by more than 50% of the guidelines reviewed as being essential to the provision of quality end-of-life care. While the guidelines offered somewhat different definitions of the domains, we provide a working definition that attempts to synthesize common
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Table 1 Summary of Domains Idnetified in 30 Sets of Quality of Care Guidelines and Expert Opinion Domain
Sources Identifying Domain (n 30, with citations)
Definition
Physical well-being Psychological wellbeing Autonomy: decisionmaking Satisfaction/patientcentered care Satisfaction/familycentered care
Patient’s pain/symptom management (includes “safe and comfortable dying”7) and patient’s physical function Patient’s experience with a range of emotions, from happiness and peacefulness to depression and anxiety (includes “pyschosocial” issues around dying and grief27) Patient’s sense of the right to choose or refuse treatment(s) and setting(s) (includes “personal control”37) Patient’s view of care needs being assessed and satisfactorily met (includes enabling patient’s own maximum potential29) Family members’ and loved ones’ care needs as part of the care for the patient being assessed and satisfactorily met
n 30 (100%) Citations: 1,4–8,18–41 n 28 (93%) Citations: 1,4–6,8,18–39,41
Smooth transitions among different types and locations of care that maintain consistency, continuity, and coordination among different health care professionals and others involved in the patient’s care (includes “consistency and perseverance,”21 “continuing care,”20 “interdisciplinary team conferencing”7) Patient’s ability to find meaning in life and in the impending loss of the physical self (includes “spiritual and existential beliefs,”6 “self-determined life closure,”7 “spirituality and existential meaning,”19 pastoral counseling as care option,37 “existential distress”21) Patient’s ability to connect with others, spend time with significant people, say all that the patient wants to say, gain closurea (includes “promoting wellness,”7 peer support groups37, and social support23) Patient’s knowledge of and sense of the right to complete advance directives and/or state preferences for future medical care Health care workers’ attention to loved ones’ bereavement experiences, both anticipatory and post-death Patient and family’s fair access to types and locations of care, regardless of financial considerations, provider biases, or inappropriate regulatory barriers (includes economic and regulatory barriers,4 concerns about justice24,37) Patient’s sense of being valued as a person, of not being a burden, of being attractive, of maintaining an acceptable body imagea Informal caregiver’s physical and emotional experience with providing care (includes respecting dignity of caregiver4,36) Patient and family’s concern with financial costs of care
n 21 (70%) Citations: 1,4–8,19–22,25–27,29,32–38
n 24 (80%) Citations: 1,4,5,7,8,18,21,23–25,27–39,41 n 22 (73%) Citations: 1,4–8,19,21,22,24,25,27–32,34–36,38,39 n 21 (70%) Citations: 4–8,18,19,21,22,24,25,27,28,30,31,34– 37,39,40
Coordination and continuity of care
Spirituality and transcendence
Social well-being
Autonomy: advance care planning Grief and bereavement Access to care
Personal dignity Caregiver well-being Financial impact aDefinition
n 21 (70%) Citations: 1,4–8,19,21,23–25,27,30,32–37,39,41
n 20 (67%) Citations: 4–8, 19–24, 27–30, 32, 34–37 n 19 (63%) Citations: 4–6,8,18,21,23,26,27,30–36,38,39,41 n 19 (63%) Citations: 1,4–8,18–21,23,25–30,35,38 n 18 (60%) Citations: 1,4–6,8,18,19,23–26,31,33–37,40 n 17 (57%) Citations: 1,4,5,18,21,23–29,31,34,36,38,39 n 16 (53%) Citations: 1,4–8,21,26,29,31,33–38 n 16 (53%) Citations: 1,4–7,18,19,22,26–28,31,33,35,37,40
of the domain titled “Social well-being” draws from Stewart et al.5
themes across the guidelines. That is, some elements mentioned by the professional guidelines were described in somewhat different ways, but they clearly reflected several common underlying concepts. For some domains, the proposed definition was clear and consistent across sources. For example, all sources noted the importance of providing the dying person with their desired level of pain and symptom management. In some cases, the guidelines were less clear about the definition of a concept (e.g., spirituality) or did not link a concept to the obligations of
health care providers or others who serve dying patients and their families. Most experts recognized that quality care encompasses the needs of both patients and those close to them. For example, more the half of the sources mentioned the following four domains: 1) family-centered care and satisfaction (70%); 2) grief and bereavement, including that which occurs before as well as after a patient’s death (63%); 3) financial impact on both patient and family (53%); and 4) informal caregiver well-being, including both positive and negative experiences (53%).
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Focus Groups with Bereaved Family Members A total of 42 persons (average age 61, 70% female, 17% African American, 13% multiracial) participated in the 6 focus groups. All but 2 participants were close family members, including 14 surviving spouses and 26 children or parents. Five major themes emerged from the experiences shared by the family members during the six focus groups. The family members believed that quality end-of-life care: 1. Provides dying persons with desired physical comfort 2. Helps the dying person take control of decisions about medical treatment and daily routines 3. Relieves family members of the burden of feeling that they must be present at all times to advocate for the best care of their loved ones 4. Educates the family members so they feel confident in caring for their loved ones at home 5. Provides family members with emotional support both prior to and after the patient’s death For each of these themes, we provide illustrative narratives and quotations as examples. We have slightly edited the quotations and removed or changed some information that might identify specific individuals.
1. Providing Desired Physical Comfort. For focus group participants, providing the desired level of physical comfort was paramount to the quality of care provided by health care professionals to a dying family member. Although none of the focus group participants relayed a tragic story of untreated, horrendous pain, many echoed the widow who said that her husband’s biggest concern was untreated pain. In terms of my husband, I know what was most important to him was to be free of pain. He was being cared for if he would not be in terrible pain. Family members stressed the importance of health care providers anticipating needs for physical comfort and responding quickly to their reports of pain.
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During those last days . . . the nurses would come in at least every 15 minutes. They’d ask, “Is everything okay? Do you need anything?” We’d push the button, and they would be there. 2. Achieving Control over Everyday Decisions and Shared Control Over Treatment Decisions. Family members reported that having control of care decisions was very important to them and their loved one. Both dying persons and their families should be involved in choices that range from health care decisions (such as resuscitation) to everyday matters such as when to get out of bed. She died at the care center. She was a nocode. That was her choice, but also to be taken care of when she needed to be taken care of. She was in the care center for a full month with a full code on her records. You must insist that you get to see their medical records. You have a right to do that. Control was defined not only in terms of medical decisions but also as more mundane daily choices that may affect the quality of life and provide some control to people who no longer can control many elements of their life. For example, such daily choices may include going outside to a patio in a nursing home or choosing when to bathe. For patients and families making decisions, information and communication were important. Participants made clear that physicians, in particular, play a central role in communicating information in a timely, full, and compassionate manner. You have to communicate with your doctor, and if you can’t communicate with them, then you’re with the wrong person. You have the wrong physician. You have to be able to communicate; this is what I think. Let’s come to a joint decision, but you have to be able to talk to them. If you can’t talk to them, then you’re going to the wrong doctor. You need to change doctors. That’s my feeling. I think that was key to me dealing with my father’s death was the degree to which information was shared with me, and the timeliness of the sharing, and perhaps the compassion with which that was communicated.
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Some family members indicated that they felt abandoned in the decision-making process. It was as if the burden of decision-making was solely theirs rather than a shared process with doctors, nurses, and others providing care.
noy me if I went to the nurse’s station and they were busy, and they wouldn’t even look up, but I would say “Excuse me, excuse me, I have a question” or “I need some help with something.”
And you are making all the decisions and in such an emotional state and you are hoping and praying you are making the right decisions, even though they’ve signed everything. The reality of making those decisions is something that you have to live with, always.
Many of the families of patients who died in hospitals and nursing homes spoke of this constant burden of advocacy. They feared that basic needs would be neglected if they had to leave their loved ones alone.
Towards the end . . . everything is on you. It’s your responsibility to make all the decisions and to hope that they are comfortable and that you are making the right decisions. All of her medical care, all those decisions had to be made by me, and if I made the wrong decision then I was going to be the one that had to suffer as well. 3. Easing the Family’s Burden of Advocacy for Quality of Care. Except for those served by hospices, family members spoke of the burden that resulted from their self-imposed role of advocating for the best care for their loved ones. One family member felt she had the responsibility but not the “equal power” to demand quality medical care. I think it’s a very complicated situation to be an advocate in a world where you are not an equal. I felt a strong sense of advocacy for her, and no, I’m not a medical person. Again, I have some common sense, and I do have a heart. Some of my questions used to be somewhat like “Well if you don’t do that, what does that mean?” I would make them answer because I think you’re right. You need to because sometimes they would act hurried, and they would act rushed, and they would look at their watch. I made a conscientious decision that I don’t really care what you have to do. It really is not my problem, and I’m sympathetic to everyone in this hospital, but my concern right now is this patient here in this bed, and I would make them answer questions. I would call them, and I would ask for pager numbers, and I would ask how I could reach somebody. Sometimes it used to an-
And you are there when she is calling the nurse and the nurse doesn’t respond. And you are thinking if they are not doing it while I’m here, being the advocate, what are they doing when I’m not here? And I was there most of the day, but I didn’t sleep there at night . . . [Another Family member replies] . . . That’s the strongest word you’ve used. Everyone needs an advocate, no matter what your situation is. We found hospice was our advocate. I gave up fighting when hospice came in. 4. Educating Family Members to Increase Their Knowledge and Confidence. For those persons dying at home, family members spoke of their own important role in end-of-life care. They also spoke of the fears that often accompanied the role. Many believed they were not adequately prepared or trained about what they should expect and how to appropriately perform such important tasks as giving medications. I’m glad I did it [keep her at home] but I think towards the end . . . giving the medications and upping the medications seemed so fast. All of the sudden now she is on all this morphine and all this whatever it is. And that kind of bothered me too. It really did. Because it was like, my God, I’m giving her this stuff. Am I giving her too much? I’m not a trained medical person. I, being the caregiver, I was scared to death. I mean I’m not a nurse. I don’t have that experience. 5. Providing Emotional Support Before and After the Patient’s Death. Participants in these focus groups expressed the need for more emotional support both prior to and after the patient’s
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death. Caregiving, while often rewarding, can be taxing on family members. Thus, they often needed the emotional support similar to that available to patients. Participants also described the need for information on the impact that a person’s life-threatening illness might have on their family relationships. You know the one thing that I would have expected that we never received was—you know once my husband was diagnosed and we were sent home. There was a psychologist there, and she was wonderful, but it’s focused on the patient, and as the caregiver I didn’t have a clue. And to go home and you’ve got somebody that needs you, and you’re dealing with emotions, and illness, and family, and trying to maintain your own life. I mean I was working full-time, and you can’t do it. I think the greatest fear for me was every time we left the hospital because when he was in the hospital at least I knew he was being cared for. But just the whole communication and caregiving aspects of it . . . Nobody really sits you down and let’s you know what to expect and how you can help . . . What’s it going to be like on your relationship and those kinds of things? We didn’t get that. Family members and other loved ones not only want to be informed about what to expect while the patient is dying but also need help with the process of bereavement. I was not prepared for how it actually went. I was not prepared for my emotions. And afterwards, actually I did go to several bereavement things. They were beneficial. I needed to vent. When my wife died, it was in hospice. They were so sympathetic, probably for two or three months after my wife passed away they would be calling me wanting to know if I was okay and if my children were okay. Would I like to come in and talk to somebody? Grief counseling, things such as that. And possibly [the nursing home] could take a lesson from hospice and care for those who are left behind. Additional Concerns of Focus Group Participants. Family members noted several other concerns. Some wanted health care institutions to facilitate the involvement of a spiritual leader, but this needed to be done in a sensitive manner
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and not forced upon them. One participant said, “I don’t think it [chaplain services] should be pushed down people’s throats.” Family members of persons dying with home care services also stressed the importance of continuity of care, for example, having the same care provider over the course of the illness. Finally, family members expressed concerns that their frail and dependent loved ones be treated with dignity and respect. Respect and dignity to me should be the most and best that we can give anyone that is being dependent upon someone else to care for them. That was not given. For them to feel secure in their surroundings.
Patient-Focused, Family-Centered Medical Care Based on our review of expert opinions and our analysis of focus group results, we developed a conceptual model of quality of care at the end of life. This model then guided the construction of a survey instrument to measure family members’ views on the quality of end-of-life care. The fundamental premise of the model is that care at the end of life must be simultaneously patient-focused and family-centered. Consolidating themes from the focus groups and literature review, we defined five central elements of patient-focused, family-centered health care. Such care: • Provides patients with desired physical comfort and emotional support • Promotes shared medical decision-making • Provides health care and related services that are focused on the needs and values of the dying person • Attends to the needs and values of those who care for and love the dying person • Coordinates health care and related services to smooth patient and family transitions among sites and types of service. Table 2 proposes definitions for each of these domains. Based on this conceptual model, we developed a survey instrument for bereaved family members. To capture information relevant to each domain of quality, the instrument includes questions that ask family members to report on what happened to the patient and questions that ask them to rate the quality of care provided. Table 3 lists the survey questions and the domains to which they relate.
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Table 2 Domains of Patient-Focused, Family-Centered Care for Patients and Families Facing Serious, Progressive Illness Domain of Care
Definition
Provide desired level of physical comfort and emotional support for patient
Patients should receive their desired level of physical comfort and emotional support
Promote shared decision-making
Patients with serious, progressive illnesses and their family members should be adequately informed about the disease, its prognosis, their palliative and other care options (including the likely benefits and burdens), and the role of advance care planning.
Focus on the individual
Health care professionals should treat patients with dignitiy, sensitivity, kindness, and respect for their individual needs and preferences for medical and other care. Health care professionals should also attend to the patient’s needs for closure of important relationships, spirituality, and transcendence in a sensitive manner.
Attend to the needs of the family
Before and after a loved one’s death, family members and close friends should be provided with information, training, and emotional support to help them prepare for and cope with the psychological, practical, and spiritual demands they may face.
Ensure coordination of care
A clearly identified professional responsible for overseeing a multidisciplinary team that provides consistent and coordinated care across different settings and service categories should lead care for patients and families.
Discussion A fundamental barrier to improving the quality of care for the dying is the lack of measurement tools that capture the patient and family perspective on the quality of end-of-life care. Our goal is to develop both prospective and retrospective survey tools that measure both the dying person’s and family member’s perspectives on the quality of care. Although chart reviews42,43 and interviews with staff44 provide relevant information on the care provided to dying people and their families, only the dying person and their family member can report accurately on certain important aspects of care—such as whether medical decisions reflected informed patient preferences or whether the dying person received their desired level of pain control.13 Unlike previous efforts to develop conceptual models,4–6,26 we have relied on both expert opinions and views from bereaved family members to develop a model that is the basis for designing the AfterDeath Bereaved Family Member Survey. Both experts and focus group participants provided important insights into shaping the conceptual model. Although experts and professional guidelines often used more complex language than focus group participants (e.g., “physical well-being” rather than “physical comfort”), both agreed on important areas. Both emphasized providing the desired level of physical comfort and honoring patients’ preferences. Yet family members emphasized that patients’ autonomy included not only treat-
ment decisions (e.g., about use of antibiotics) but also making everyday decisions, such as when a person got out of bed or had a bath in a nursing home. Expert guidelines endorse shared decision-making, but family members sometimes felt that they alone were responsible for decisions at the end of life. One focus group participant best stated this concern: “Towards the end . . . everything is on you . . .” Family members often spoke of the burdens of advocating for the best care of their loved ones. They found this task difficult in a “medical world” that they did not understand and in which they did not feel equal with health care providers. Often, focus group participants feared what might happen when they were not present to demand even the very basic aspects of care, such as bathing or responding to a call light. Clearly, the family members’ stories provide a vivid sense of their concerns. Still, professionals increasingly recognize that medical care must recognize and meet consumer expectations. More than 75% of expert sources evaluated here acknowledged the importance of patient and family preferences and values. Our conceptual model of patient-focused, family-centered medical care proposes that health care at the end of life must be focused on the patient, but it also acknowledges the important role of family members. Consequently, a key goal of end-of-life care is to enhance the quality of life of both patients and family members.1 As shown in Table 4, two of our domains—
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Table 3 Domains and Selected Corresponding Survey Questions Domain Provide desired level of physical comfort and emotional support for patient Physical comfort - D12a, D15, D15a, D16b
Selected Corresponding Questions D12a. In those last X days, did (his/her) doctor or the medical staff who cared for (him/her) at [LAST PLACE] tell you about how (his/her) pain would be treated, in a way that you could understand? [ ] YES [ ] NO D15. In the last X days while (he/she) was at [LAST PLACE], did [PATIENT] receive too much, too little, or just the right amount of medication for (his/her) pain? [ ] TOO MUCH [ ] TOO LITTLE [ ] RIGHT AMOUNT D15a. In the last X days while [PATIENT] was at [LAST PLACE], was there ever a time when one doctor or nurse said thing about treatment of (his/her) pain and another said something else? [ ] YES [ ] NO D16b. How much help in dealing with (his/her) breathing did [PATIENT] receive — less than was needed, or about the right amount? [ ] LESS THAN WAS NEEDED [ ] RIGHT AMOUNT
Emotional support - D17b
D17b. How much help in dealing with these feelings [of anxiety or sadness] did [PATIENT] receive—less then was needed or about the right amount? [ ] LESS THAN WAS NEEDED [ ] RIGHT AMOUNT
Rating - F3
F3. (In the last X days of (his/her) life) how well did those taking care of [PATIENT] at [LAST PLACE] make sure (his/her) symptoms were controlled to a degree that was acceptable to (him/her)? [ 0 1 2 3 4 5 6 7 8 9 10 ]
Promote shared decision making Communication/decision making - C1a, C1b, C1c, D19
C1a. In those last X days, was there ever a problem understanding what any doctor at [LAST PLACE] was saying to you about what to expect from treatment? [ ] YES [ ] NO C1b. In those last X days, did you feel that the doctors you talked to at [LAST PLACE] listened to your concerns about [PATIENT]’s medical treatment? [ ] YES [ ] NO [ ] HAD NO CONCERNS C1c. In those last X days, how much information did the doctors provide you about [PATIENT]’s medical condition — would you say less information than was needed, more was needed, or just the right amount? [ ] LESS THAN WAS NEEDED [ ] MORE THAN WAS NEEDED [ ] JUST THE RIGHT AMOUNT D19. In (his/her) last X days [PATIENT] was at [LAST PLACE], was there ever a decision made about (his/her) care without enough input from (him/her) or (his/her) family? [ ] YES [ ] NO
Advance care planning - D2, D3, D4
D2. To the best of your knowledge, did [PATIENT]’s doctor or the medical staff who cared for (him/her) at [LAST PLACE] speak to (him/her) or you about (his/her) wishes about medical treatment? [ ] YES [ ] NO D3. Did (his/her) doctor or the medical staff who cared for (him/her) at [LAST PLACE] speak to (him/her) or you about making sure (his/her) care was consistent with (his/her) wishes? [ ] YES [ ] NO D4. In [PATIENT]’s last X days at [LAST PLACE], was there any medical procedure or treatment that happened to (him/her) that was inconsistent with (his/her) previously stated wishes? [ ] YES [ ] NO
Rating - F2
Focus on individual Control and respect - D20a, D20b, D20c, D21, D22, D23, D24, D25, E2
F2. In the last X days of (his/her) life, how would you rate how well those taking care of [PATIENT] at [LAST PLACE] provided medical care that respected (his/her) wishes? [ 0 1 2 3 4 5 6 7 8 9 10] D20. In (his/her) last X days at [LAST PLACE], was [PATIENT] able . . . a. . . . to wake up when (he/she) wanted to?[ ] YES [ ] NO [ ] INAP b. . . . to eat when (he/she) wanted to? [ ] YES [ ] NO [ ] INAP c. . . . to choose what time to be bathed? [ ] YES [ ] NO [ ] INAP D21. In those last X days, how often were [PATIENT]’s personal care needs—such as bathing, dressing, and changing bedding— taken care of as well as they should have been—would you say always usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER (continued)
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Table 3 Continued Domain
Selected Corresponding Questions D22. In the last X days while [PATIENT] was at [LAST PLACE], how often was (he/she) treated with respect by those who were taking care of (him/her)—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER D23. In those last X days, how often was [PATIENT] treated with kindness by those who were taking care of him/her—always, usually, sometimes, never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER D24. During [PATIENT]’s last X days, was there enough help available to meet (his/her) personal care needs, like bathing, dressing, feeding, and going to the bathroom? [ ] YES [ ] NO D25. During those last X days, was there enough help with medications and getting dressings changed? [ ] YES [ ] NO E2. In the last X days at [LAST PLACE] how often did you have concerns about [PATIENT]’s bathing, dressing, and changing bedding—being met when you were not there—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER
Closure - D32, D33, D34, D35
D32. At the time of (his/her) death, with respect to end-of-life paperwork, such as a will and up-to-date information on insurance and bank accounts, how (organized/prepared) was [PATIENT]—extremely, very, somewhat, a little, or not at all? [ ] EXTREMELY [ ] VERY [ ] SOMEWHAT [ ] A LITTLE [ ] NOT AT ALL D33. At the time of (his/her) death, how comfortable was [PATIENT] with the way relationships were left with friends and family—extremely, very, somewhat, a little, not at all? [ ] EXTREMELY [ ] VERY [ ] SOMEWHAT [ ] A LITTLE [ ] NOT AT ALL D35. At the time of (his/her) death, how at ease was [PATIENT] with respect to spiritual or religious matters—very much, somewhat, a little, or not at all? [ ] EXTREMELY [ ] VERY [ ] SOMEWHAT [ ] A LITTLE [ ] NOT AT ALL
Rating-F4
Attend to the needs of the family Family confidence in their knowledge and skills - D26b, D27b, D28b, D29b (only at home)
F4. In the last X days of (his/her) life, how well did those taking care of [PATIENT] at [LAST PLACE] make sure that [PATIENT] died with dignity—that is, died on (his/her) own terms? [ 0 1 2 3 4 5 6 7 8 9 10] D26b. How confident were you that you knew what to expect while [PATIENT] was dying—very confident, fairly confident, or not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT D27b. How confident were you that you knew what to do at the time of death—very confident, fairly confident, not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT D28b. How confident were you that you understood about the medicines that would be used to manage (his/her) pain, shortness of breath, or other symptoms—very confident, fairly confident, or not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT D29b. [only if at home] How confident did you feel about taking care of [PATIENT] at home—very confident, fairly confident, not confident? [ ] VERY CONFIDENT [ ] FAIRLY CONFIDENT [ ] NOT CONFIDENT
Family emotional support - E6, E7, E8
E6. During [PATIENT]’s last X days, how much support in dealing with your feelings about [PATIENT]’s death did the doctors, nurses, and other professional staff taking care of (him/her) provide you—less support than was needed or the right amount? [ ] LESS THAN WAS NEEDED [ ] RIGHT AMOUNT E7. During those last X days, did a doctor, nurse, or other professional staff taking care of [PATIENT] at [LAST PLACE] talk about how you might feel after [PATIENT’S] death? [ ] YES → Was it done in a sensitive manner? [ ] YES [ ] NO [ ] NO → Would you have wanted them to? [ ] YES [ ] NO E8. In the last X days, did a doctor, nurse, or other professional staff taking care of [PATIENT] at [LAST PLACE] suggest someone you could turn to for help if you were feeling stressed? [ ] YES [ ] NO (continued)
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Table 3 Continued Domain Family spiritual support - E4, E4a, E4b
Selected Corresponding Questions E4. During the last X days while [PATIENT] was at [LAST PLACE], did someone talk with you about your religious or spiritual beliefs? [ ] YES [ ] NO E4a. Was this done in a sensitive manner? [ ] YES [ ] NO E4b. Did you have as much contact of that kind as you wanted in those last X days? [ ] YES [ ] NO
Rating - F5
Ensure coordination of care C1d, C2, D15a, D18
F5. In the last X days of (his/her) life, how well did those taking care of [PATIENT] at [LAST PLACE] do at providing emotional support for you and [PATIENT]’s family and friends? [ 0 1 2 3 4 5 6 7 8 9 10 ] C1d. In those last X days, how often did any doctor give confusing or contradictory information about [PATIENT]’s medical treatment—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER C2. In (his/her) last X days at [LAST PLACE], was there always a doctor in charge of [PATIENT]’s care? [ ] YES [ ] NO D15a. In the last X days while [PATIENT] was at [LAST PLACE], was there ever a time when one doctor or nurse said one thing about treatment of (his/her) pain and another said something else? [ ] YES [ ] NO D18. In those last X days, was there any problem with doctors or nurses not knowing enough about [PATIENT]’s medical history to provide the best possible care? [ ] YES [ ] NO
Inform and educate - D26, D26a, D27, D27a, D28, D28a, E1
D26. At any time while [PATIENT] was (in the hospital/in the nursing home/involved with the hospice/the VNA program) did you or your family receive any information about what to expect while (he/she) was dying? [ ] YES [ ] NO D26a. Would you have wanted (some/more) information about that? [ ] YES [ ] NO D27. At any time while [PATIENT] was (in the hospital/in the nursing home/involved with hospice/the VNA program) did you or your family receive any information about what to do at the time of (his/her) death? [ ] YES [ ] NO D27a. Would you have wanted (some/more) information about that? [ ] YES [ ] NO D28. At any time while [PATIENT] was (in the hospital/in the nursing home/involved with hospice/the VNA program) did you or your family receive any informaiton about the medicines that would be used to manage (his/her) pain, shortness of breath, other symptoms? [ ] YES [ ] NO D28a. Would you have wanted (some/more) information about the medicines? [ ] YES [ ] NO E1. In the last X days while [PATIENT] was at [LAST PLACE], how often were you or other family members kept informed about [PATIENT]’s condition—always, usually, sometimes, or never? [ ] ALWAYS [ ] USUALLY [ ] SOMETIMES [ ] NEVER
Rating-F1
F1. In the last X days of (his/her) life, how well did the doctors, nurses, and other professional staff who cared for [PATIENT] at [LAST PLACE] communicate with (him/her) and the family about the illness and the likely outcomes of care? [ 0 1 2 3 4 5 6 7 8 9 10 ]
These and additional survey questions are available on the World Wide Web at http://www.chcr.brown.edu/pcoc/NEWVALIDATEDINSTRUM.HTM
“providing desired physical comfort and emotional support” and “promoting shared decision making”—are widely supported by previous expert guidelines and research with patients, families, and health care providers.
Two other domains—“focus on individual” and “attend to the need of the family”—are both similar to and different from previous models and qualitative research. The domain “focus on individual” responds to
Contributing to others Affirmation of the whole person Strengthening relationship Hopes and expectations Patients’ perceptions of care Spiritual and existential Spriritual well-being beliefs
Relieving burden Family well-being and perceptions Economic demands and caregiving demands
Completion
Focus on the individual, including closure, respect, and dignitiy of the patient Educating on what to expect Attend to the needs of the family for and increasing confidence in information, increasing their confidence providing care in helping with patient care, and providing emotional support prior to and after the patient death. Emotional support prior to and Coordination and continuity after the patient’s death of care Informing and educating Social relationships and support
Achieving sense of the dying Psychosocial well-being Effective and functioning grieving
Psychological and cognitive symptoms
Pain and symptom management Clear decision making
Providing desired physical comfort Achieving control over health care decisions and every day decisions Preparation for death Burden of advocating for quality medical care
Providing desired level of physical comfort and emotional support Promote shared decision making
Patient-Focused, Family-Centered End-of-Life Care
Safe and Receiving adequate pain and comfortable dying symptom management Physical well-being and Self-determined Avoiding inappropriate functioning life closure prolongation of the dying Overall quality of life
NHO Pathway7 IOM Approaching Death4 Emanuel and Emanuel6
Physical symptoms
Bereaved Family Members from the Current Study
New Proposed Conceptual Model of Patient-Focused, Family Centered Medical Care Patients, Families and Health Care Providers12 Patients with HIV Renal Failure on Dialysis and Nursing Home Residents46
Table 4 Comparison of Domains of Expert, Patients, Family Members, Health Care Providers, and New Proposed Model
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two specific concerns. First, focus group participants as well as experts noted the importance of “closure” for dying patients. Closure addresses social relationships, transcendence, and patients’ spiritual needs. It should be noted that participants voiced concern that spiritual needs be addressed in a sensitive manner that does not “force” the issue. Other studies of patients and families have noted the importance of “completion” (as noted by Steinhauser and colleagues12) or “strengthening relationships with loved ones” (as noted by Singer and colleagues45). Second, family members often voiced concern over how the patient was treated when they were not present. Many believed that they must be present at all times to advocate for good care. Family members’ self-imposed role of being the patient’s advocate was often viewed as burdensome. A driving concern was that their dying loved one be treated with dignity and kindness, which includes attending to the patient’s basic self-care needs as well as providing their desired level of control over everyday decisions. The domain of “attending to the needs of family” recognizes that family members are an important focus in measuring the quality of end-of-life care. Care of dying persons often relies on family members,46 who provide this care even if it results in a family member having to quit a job or defer education.47 Most experts recognized the importance of providing emotional support to family members before and after the patient’s death. In addition, Steinhauser and colleagues found that patients, families, and health care providers voiced a need for more information about what patients and family members could expect while the patient was dying.12 In contrast, our conceptual model responds to the voices of the focus group participants by emphasizing the importance of family members being provided with both information on what to expect and the skills necessary to help care for the patient at home. One family member stated this best: “you know what to expect, how you can help, and what you can expect.” We found that family members were concerned with not only information but also their competence in providing medical care for their dying loved one.
Strengths and Limitations Focus groups provide a means for indepth exploration of a complex topic—such as de-
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fining the quality of medical care. Focus groups are not designed to provide quantitative estimates of the family members’ priorities. Our recruitment efforts involved different geographic locations of the country with good representation of ethnic minorities in 3 of the 6 focus groups. Yet we conducted only 6 groups and, as with much qualitative data, our results are not generalizable to other populations. Unlike previous studies, though, we did recruit persons from diverse settings of care. Lastly, our study is strengthened by the fact that family members were not speaking of a hypothetical situation but rather were reflecting on their experiences with the medical care experienced by a close family member at the end of life.
Conclusion In comparing the perspectives of both family members and experts, we found many similarities in the ways they defined or viewed quality of care at the end of life. Both identified symptom management, shared decision-making, and emotional support prior to and after the patients’ death as important for quality end-oflife care. Family members, in addition to these domains, stressed the importance of dignified and respectful treatment of those who are dying. They wanted better information on what to expect and how they can help their dying relatives. A conceptual model of patientfocused, family-centered medical care was created and that model was used to write potential questionnaire items for bereaved family members. The validation of this instrument is described in separate article in this edition of Journal of Pain and Symptom Management.
Acknowledgments
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Funded by the Robert Wood Johnson Foundation, Grant no. 038149.
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