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‘I Don’t Want to Live This Way, Doc. Please Take Me Off the Ventilator and Let Me Die.'
Ethical Legal Feature
‘I Don’t Want to Live This Way, Doc. Please Take Me Off the Ventilator and Let Me Die.’ Feature Editor Introduction: Kristi L. Kirschner, MD One of the most difficult situations that health care professionals can face is a request to withdraw life-sustaining treatment, particularly when the person making the request has a new-onset life-altering, but not fatal, disabling condition. The story of Dax Cowart has underscored this issue into the hearts and minds of recent generations of many medical students. In 1973, Mr Cowart, a 26-year-old Air Force reserve fighter pilot, sustained extensive total body surface area burns from a gas explosion, which killed his father. While badly injured and lying on the side of the road, Mr Cowart asked the first man who got to him to get him a gun, that he was a “dead man” anyway. Over the subsequent year of painful treatments, Mr Cowart repeatedly requested to forego treatment and be allowed to die. In 1974, with the help of Robert B. White, MD, the psychiatrist consulted to evaluate Mr Cowart’s decision-making capacity, a film, Please Let Me Die, was made, which addressed the difficult issues raised by Mr Cowart’s story. A decade later, an updated and enhanced version, Dax’s Case, was released [1]. Both films have been used extensively in teaching medical ethics classes in medical schools. Stories such as Dax’s have brought into sharp focus the double-edged nature of modern medical technologies, generating a new archetypal narrative pitting patient autonomy against beneficence and medical paternalism. Iterations of the genre flourished in the 1970s and 1980s, with legal cases, and with fictional and made-for-television dramas peppering the airways and headline news. Who can forget the gut-wrenching performance of Richard Dreyfuss, as sculptor Ken Harrison, in Whose Life Is It Anyway?, the Tony award winning play turned into movie [2]. Cocktail party conversations and family dinner table debates percolated. Did Harrison, who acquired quadriplegia in a motor vehicle crash, have a right to refuse medical treatment? What is the difference between refusing medical treatment and committing suicide? What are the roles and obligations of the health care team? A number of notable court cases kept these issues in the public eye in the 1980s and early 1990s, helped by the coverage of popular news sources such as 60 Minutes and People Magazine (eg, Elizabeth Bouvia, Kenneth Bergstedt, David Rivlin, and Larry McAfee, the latter’s life story was also made into a television movie, The Switch, in 1993) [3]. As recently as 2004, this theme again captured national consciousness in the Academy Award winning movie, Million Dollar Baby, with Hilary Swank playing Maggie Fitzgerald, an up-and-coming boxer rendered quadriplegic and ventilator dependent by an underhanded blow in a boxing match [4]. Then there was the media circus that surrounded the more than 100 assisted suicides of Jack Kevorkian, his subsequent trials, which finally ended in 1999 with a conviction after 60 Minutes televised the taped active euthanasia by lethal injection of a patient with amyotrophic lateral sclerosis, Thomas Youk. One could argue that there really is not anything more to discuss here. The courts, bioethicists, and the medical profession are in consensus, that is, that the competent patient has the right to refuse treatment, even life-sustaining treatment. But there in lies the rub, when is someone truly competent? Most would agree that Dax Cowart was not competent when he asked for a gun immediately after his injury. He was likely in a state of biologic and emotional shock. Later he was on high doses of medication and sedatives, and furthermore lacked adequate information about his condition and treatment options. The more difficult question is, when did he regain his competency (or more precisely, his decision-making capacity) for this particular decision? PM&R
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Feature Editor: Kristi Kirschner, MD Clinical Medical Humanities and Bioethics, and Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine; Medical Staff, Schwab Rehabilitation Hospital, Chicago IL. Address correspondence to: K.L.K.; e-mail: [email protected] Disclosure: nothing to disclose
Invited Commentators: Thomas R. Kerkhoff, PhD, ABPP/RP University of Florida, Gainesville, FL Disclosure: nothing to disclose Lester Butt, PhD, ABPP/RP Craig Hospital, Englewood, CO Disclosure: nothing to disclose Robert Yamada Disclosure: nothing to disclose Christopher C. Battaglia, MD Center for Ethics, Humanities and Palliative Care, University of Rochester School of Medicine, Rochester, NY Disclosure: nothing to disclose Joanne Wu, MD Unity Spine Center, Department of Neurology and Rehabilitation, Unity Health System, Rochester, NY Disclosure: nothing to disclose Timothy E. Quill, MD Center for Ethics, Humanities and Palliative Care, University of Rochester School of Medicine, Rochester, NY Disclosure: 3A, paid talks on palliative and end of life care; 4A, royalties from books on palliative and end of life care; 8A, subinvestigator on several grants exploring medical decision-making and end of life care Erin Didde, MA, CCC-SLP Assistive Technology Center, Rehabilitation Institute of Chicago, Chicago IL Disclosure: nothing to disclose Elizabeth Bahr, MA, CCC-SLP Assistive Technology Center, Rehabilitation Institute of Chicago, Chicago IL Disclosure: nothing to disclose Disclosure Key can be found on the Table of Contents and at www.pmrjournal.org
© 2011 by the American Academy of Physical Medicine and Rehabilitation Vol. 3, 968-975, October 2011 DOI: 10.1016/j.pmrj.2011.09.001
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Decision-making capacity involves a number of factors well outlined by others [5]: ● ● ● ● ● ●
Alertness Orientation Ability to communicate choices Understanding of relevant information Appreciation of the situation and its consequences Ability to manipulate information rationally
Applying these standards to people with a new-onset disability can be very challenging. In a classic 1993 New England Journal of Medicine commentary, “When life support is questioned early in the care of patients with cervical-level quadriplegia” [6], the authors (faculty from the University of Washington) advocated for a “time-limited trial of treatment,” that, “decisions about life support in an alert patient with cervical spinal cord injury should, except in rare circumstances, be delayed until the patient appreciates fully what life will be like after a full course of rehabilitation [6].” For this column, I have asked several expert commentators to help us tackle the following questions: 1. How does one judge whether the person has a sufficient understanding of his or her condition to refuse life-sustaining therapy after a new onset disability? 2. Is there a time frame when a refusal of treatment should not be honored? 3. What are ways in which communication can be optimized when a person is paralyzed and intubated, such as patients often are in the intensive care unit? 4. What can we learn from people who questioned whether their lives would be worth living and ultimately changed their minds [7]?
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One group commentary is provided by Thomas R. Kerkhoff, PhD, ABPP/RP, University of Florida, Gainesville, Florida, Lester Butt, PhD, ABPP/RP, Craig Hospital, Englewood, Colorado, and Mr Robert Yamada. The second group commentary is provided by Christopher C. Battaglia, MD, Fellow, Hospice and Palliative Care, University of Rochester School of Medicine, Center for Ethics, Humanities and Palliative Care Rochester, New York; Joanne Wu, MD, Unity Spine Center, Department of Neurology and Rehabilitation, Unity Health System, Rochester, New York, and Timothy E. Quill, MD, professor of medicine, psychiatry and medical Humanities, Center for Ethics, Humanities and Palliative Care, University of Rochester School of Medicine, Rochester, New York. The third commentary is provided by Erin Didde, MA, CCC-SLP, and Elizabeth Bahr, MA, CCC-SLP, both of the Assistive Technology Center, Rehabilitation Institute of Chicago, Chicago, Illinois. As always, we invite you to write in with your reactions and suggestions for future columns.
REFERENCES 1. Dax’s Case. Who Should Decide? Available at http://www.filmakers. com/index.php?a⫽filmDetail&filmID⫽157. Accessed September 11, 2011. 2. Clark B. Whose Life Is It Anyway? A Full-Length Play. Chicago: Dramatic Publishing; 1974. 3. Kirschner KL. Calling it quits: When patients or proxies request to withdraw or withhold life-sustaining treatment after spinal cord injury, special ethics issue. Top Spinal Cord Inj Rehabil 2008;13:30-43. 4. Kirschner KL. Depictions of physical suffering: Eastwood’s Baby hits below the belt [editorial]. Chicago Tribune. March 6, 2005:Perspectives Section: 1, 7. 5. Applebaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. N Engl J Med 1988;319:1635-1638. 6. Patterson DR, Miller-Perrin C, McCormick TR, et al. When life-support is questioned early in the care of patients with cervical-level quadriplegia. N Engl J Med 1993;328:506-509. 7. Facing Disability. Available at http://www.facingdisability.com/ questions/feelings-/did-you-ever-consider-suicide. Accessed September 11, 2011.
Commentary from Thomas R. Kerkhoff, ABPP/RP, Lester Butt, ABPP/RP, and Robert Yamada We are pleased to weigh in on revisiting these difficult issues, which remain as unsettled today as they were in the latter decades of the previous century. The first two of us (T.K., L.B.) are board-certified rehabilitation psychologists, each with 30⫹ years of experience in spinal cord injury (SCI). Between us, we have cared for more than 75 ventilator-dependent patients with SCI. Of these patients, fewer than 2% have chosen to withdraw from treatment, although roughly 80% have raised the question of doing so. We invited Mr Robert Yamada to be a coauthor. As a man who sustained a SCI in 2009 at the age of 23, Mr Yamada augments the commentary by adding a personal perspective.
In this commentary, we address 2 fundamental issues: (1) quality of life framed in the context of a health care system focused on preserving life, and (2) the time-limited trial (TLT) of treatment approach to decision making. To ground our discussion, we use 2 distinct case examples. The first (unpublished) case example is that of a 63-year-old man who questioned continued treatment, agreed to a TLT of therapy and, after a year, chose to discontinue the ventilator. (This 30-year-old unpublished case has substantially been deidentified; in addition, a release for educational purposes was secured subsequent to the events reported.) The second example is Mr Yamada’s story, which illustrates a common scenario in which the question of withdrawal of treatment
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was never explicitly discussed but intermittently and privately considered. In approaching these issues, it is important to discuss the issue of bias in both health care and society. On the one hand, health care professionals are exquisitely trained to protect and preserve human life. Medicine’s technologic prowess symbolizes the U.S. health care system and has surely allowed individuals to survive, who, in earlier decades, would have died. On the other hand, our society has come to value the concept of quality of life, as defined by the individual. A catastrophic injury and attendant disability can threaten foundational tenets of perceived quality of life. There is no easy universal position regarding the right of individuals (or valid surrogates and/or proxies) to make decisions about treatment intensity (or withdrawal of such). In reviewing our experiences, we (T.K., L.B.) have witnessed the disquieting nature and resultant compromised autonomy when decisions are made unilaterally by health care professionals. Such decisions, often grounded in the patient’s “best interest,” often incorrectly assume that patients are emotionally unable to make decisions in the affective throes of a new-onset catastrophic disability. Indeed, it is a daunting task to make a sufficiently informed decision under such circumstances but not impossible. In general, however, TLTs of treatments in such circumstances can be very helpful (as illustrated in the first case below) [1]. Consider, for example, the pressure-filled environment of the emergency department. If the patient is alert and cognitively coherent, despite experiencing the new onset of disability, or a surrogate makes decisions for the incapacitated patient from the perspective of substituted judgment, then the possibility of discontinuing treatment should be considered, when assuming that a focused discussion of decisional consequences ensues. The right to make adequately informed medical decisions should be honored, no matter the treatment environment, unless compelling reasons not to do so are offered [2,3]. With the passage of time, however, questions about informed consent that arise in the acute care environment are often rendered moot in the postacute or outpatient setting. Individuals who initially consider refusing life-sustaining interventions often reconsider as they experience life with disability. When the acute crisis passes, it is easier to consider alternative courses of action, and their consequences. The following examples illustrate 2 men, both with ventilatordependent SCIs who arrive at very different decisions. The first patient was a 63-year-old newly retired school principal who sustained a high cervical SCI in a bicycling accident, with resultant ventilator dependence. Despite multiple efforts to wean him off full-time ventilation, he continued to require full ventilator support (this was before phrenic nerve pacers). The patient and his wife had explored and embraced the issue of termination of life support and quality of life via literature from the Hemlock Society before the
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injury [4]. After having made the request to terminate ventilator support on the acute medicine service with no sympathetic ear, the patient renewed his request (with his wife’s support) upon admission to the rehabilitation center. The issue was discussed at length and put before the medical center’s ethics committee for deliberation. The committee recommended that the patient consider living a year with his wife in the community after successfully completing his rehabilitation program. This TLT was intended to address the issue of life experience adequately influencing informed decision making. Fortunately, the patient had good health insurance and was provided with a sufficient level of support in the home and the community to make this option feasible. He and his wife agreed with the plan, and he was discharged home with a promise to revisit the request in 1 year. At the end of that year, the patient and wife returned and again pressed their desire to have the ventilator removed. The patient had actively engaged in everyday living, with weekly excursions into the community, by all measures a valid community integration experience. In keeping with the earlier agreement, the medical team agreed to admit the patient and disconnect the ventilator, with one caveat. If the patient was able to breathe on his own, then no further assistance to terminate life would be provided. Ironically, the patient died during a seizure the night before the planned ventilator removal. A do not resuscitate order had been in place and was respected. In this example, the patient’s clearly articulated wishes were honored after extensive and repeated examination by the health care team and members of the ethics committee to ensure decisional capacity and adequate postdisability life experience to ensure informed consent. The patient’s philosophical values and beliefs were called into question and successfully defended by the patient, with his wife in agreement. Thus, the health care team’s concerns that impulsive, ill-conceived emotional pressures would unduly affect decision making were effectively countered. Importantly, adherence to the ethical principle of respect for autonomy and the settling of issues surrounding beneficence and nonmaleficence was upheld in the decision-making process. As a counter example, Mr Yamada describes a very different experience in which the issue of withdrawal of the ventilator was never overtly raised or discussed. Mr Yamada was 23 years old when he sustained a cervical SCI in a diving accident in 2009. At no time during his acute and rehabilitation course did he raise the issue of discontinuing ventilator support, nor as a result was it ever brought up by his treatment team. His rehabilitation focused upon his acquiring and mastering an adaptive lifestyle. Mr Yamada recalls a persistent hope that he could eventually be weaned from his ventilator throughout his rehabilitation admission, but he never directly discussed the possibility of such with his treatment team. Indeed, he recalls thoughts of possibly terminating ventilator support but kept those thoughts private
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and felt that they tended to be transient. Four months after his injury, he had a diaphragmatic pacer placed, which is now activated during the day, with mechanical ventilator support at night. He is now living in his parents’ home and attending college. He too is fortunate to have adequate funding to support hired caregivers to augment his parents’ assistance throughout the 24-hour day. In reflecting upon his personal experience and lack of desire to have overt discussions about the ventilator early after his injury, Mr Yamada believes that he was able to maintain hope that he could eventually be weaned, particularly as new technologies emerge. With time, he was able to eventually adapt to his condition with the active, ongoing support of family, community, friends, and a male cousin (confidant), and with alternate week sessions with an SCI-experienced psychologist. He does not feel that failing to raise the issue was a mistake or that the health care team should feel obliged to engage in such a conversation. This case example finds a young man at a very different place in his life trajectory than the retired school principal. Decisional capacity in these 2 individuals was not an issue. The acute care environment that reflected “essential dependence” [5] triggered dissimilar reactions in these 2 individuals. In the case of the older man, the ventilator presented a perceived immutable barrier to achieving postretirement quality of life, whereas the younger individual initially considered the ventilator (and phrenic pacer) as temporary supports and, over time, as basic necessities for everyday activities. Absent substantive emergence of treatment-withdrawal issues by the patient and his or her family, this fundamental issue of discontinuing ventilator support does not need to be addressed. A common thread in these 2 narratives is the presence of strong family support for both individuals. In the case of the retired school principal, his wife shared his beliefs regarding quality of life. She also was able to actively provide care in the home to explore life with disability. Her perspective was that she would support her husband’s wishes without reservation, as she believed he would if their positions were reversed. The caregiver burden, in her opinion, was sustainable as long as quality of life was maintained. Mr Yamada, similar to the
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retired principal, also had excellent family and social support. Unfortunately this is not true for all patients. In our experience (T.K., L.B.), the small percentage of individuals that opt for termination of ventilator support is disproportionately represented by patients with long-standing emotional problems, often lack adequate caregiver support, often facing life in an extended care facility or maintain a corrosive vision of disability. The societal problem of sustained caregiving in catastrophic cases to maintain community-based living without adequate family support has yet to be sufficiently addressed in our health care system. Medicaid HomeBased Care waivers are fraught with problematic qualification criteria, insufficient resources, long wait lists, and lawsuits demanding access. The legal challenges to recent health care reforms do not bode well for a remedy in the near term. In closing, our resilient young man found strong community and family support sufficient to make the decision to continue onward, with identified life goals yet to be achieved and possibilities to be explored. Our older man decided otherwise. One wonders if seniors who experience new-onset chronic disability are faced with a challenge of personal redefinition. Clinging to preinjury contingent life goals that depend upon maintaining personally acceptable levels of health and functional status may be naive, especially after experiencing success in work and social realms before the injury. For the clinicians working with individuals with such catastrophic life changes, the challenge will remain to assist them in exploring personally relevant meaning within a technology-supported existence.
REFERENCES 1. Patterson DR, Miller-Perrin C, McCormick TR, et al. When life-support is questioned early in the care of patients with cervical level quadriplegia. N Engl J Med 1993;328:506-509. 2. Butt L, Scofield G. The bright line reconsidered: The issue of treatment discontinuation in ventilator-dependent tetraplegia. Top Spinal Cord Inj Rehabil 1997;2:85-94. 3. Butt L, Rothman J. Death can be proud. HEC Forum 1995;7:81-93. 4. Fujimura LE, Weis DM, Cochran JR. Suicide: Dynamics and implications for counseling. J Couns Dev 1985;63:612-615. 5. Stenson K, Chen N, Tansey K, et al. Informed consent and phase I research in spinal cord injury. PM R 2010;2:664-670.
Commentary from Christopher C. Battaglia, MD, Joanne Wu, MD, Timothy E. Quill, MD High cervical spine injuries often result in severe debilitation and reliance on artificial life support for ongoing survival. When such patients request cessation of life-sustaining treatments, their capacity for making such a decision warrants evaluation. In the acute phase of injury and rehabilitation, when a patient’s medical burden and functional impairment are at their worst, a patient’s decision-making ability may be compromised by a number of factors. The challenge thus presents itself: How do we
assess capacity to make major life-and-death decisions in the early phase of new-onset severe disability? How do we honor autonomy while preventing premature and underinformed treatment-withdrawal decisions? For the sake of this discussion, we will exclude patients who lack capacity and are very unlikely to regain it, and those who are terminally ill from other diseases. Our initial goals in this setting are to (1) preserve patient autonomy while preventing hasty treatment withdrawal deci-
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sions, (2) facilitate fully informed patient decision making, and (3) maintain and enhance the doctor-patient relationship by honoring a commitment to ultimately follow-through with patients’ fully informed decisions. After a thorough patient evaluation, we suggest negotiation of a time-limited trial (TLT) [1] of intensified palliative treatment followed by a reassessment phase before making a serious treatment cessation decision. To help frame our commentary, we have chosen 2 adapted cases: Patient 1. A 70-year-old woman with a cervical spinal stroke and dysphagia is experiencing depression. She does not have a tracheostomy and requires no assisted ventilation. She wants to die and not be sustained with a feeding tube. Patient 2. A 30-year-old man has become quadriplegic from a motorcycle accident and has been ventilator dependent for 5 years. He has finished his rehabilitation course and is fully adapted to his neurologic and functional level. He now wants to be allowed to die by stopping ventilator support.
MULTIDISCIPLINARY ASSESSMENT Before decision-making ability can be fully assessed, attention should first focus on the potentially reversible aspects of the patients’ suffering and the degree to which this suffering may be influencing their decision making. In addition to physical symptoms such as pain, nausea, constipation, dyspnea, and dysphagia, patients with a new cervical spine injury may also be dealing with emotional disturbances such as anxiety, depression, anger, guilt, or fear. One patient may lament the fact that he or she will never walk again, whereas another is more concerned about how this illness will impact his or her family. For some patients who lack adequate social support, much suffering is derived from intense feelings of aloneness and the prospect of lifelong institutionalized living. Severe suffering of any kind can bring about a state of desperation in which the desire to escape can become the primary motivation, thereby superseding higher levels of decision making. It, therefore, is essential to try and fully understand the many potential dimensions of each individual patient’s suffering and then to carefully tailor palliative interventions. This multidimensional intervention may also lessen the patient’s aloneness, strengthen rapport with the health care team, and help build trust. With suffering minimized to the extent possible, we may theoretically be able to unfetter the patient’s true intentions. A careful assessment of the patient’s mental status is at the core of a detailed evaluation of the patient’s capacity for decision making. Alertness and orientation can often be affected by delirious states from acute toxic metabolic derangements and from oversedation related to pain medications. Once alertness is maximized, it is important to focus on the patient’s ability to comprehend and communicate about his or her state of health and their treatment options. Recruit-
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ment of social support is also essential, including (1) family and loved ones, (2) spiritual and religious ties, (3) other core social relationships (work, hobbies, interests). As part of this overall psychosocial assessment, understanding the patient’s personal values and cultural background also is key. Language barriers and medical literacy also should be assessed. By gathering a better understanding of the patient’s mind, body, and spirit, physicians can better assess the patient’s psychological state and motivations. Consultation with a psychologist, neuropsychologist, or psychiatrist may help explore the patient’s potential coping and adaptation skills, assess for underlying disorders, such as depression and anxiety, and better understand his or her hopes and fears. All of these have an impact on determining the patient’s capacity to make medical decisions. Patient 1 update. The assessment of this patient’s mental status found her to be profoundly depressed, such that she could not see her situation clearly and could not imagine a future for herself. Patient 2 update. This patient’s assessment showed that he was thinking clearly and was not clinically depressed. He had, in fact, been thinking about and talking about stopping treatment for several years. Two independent psychiatric evaluations confirmed his full capacity for decision making, and the absence of clinical depression or anxiety. A palliative care evaluation found no unaddressed symptoms and also found his cognition to be clear. A physiatry rehabilitation consult found no acute decline in function or progression of chronic medical problems.
REASONS TO LIVE, REASONS TO DIE After a careful multidisciplinary assessment, negotiating TLT may be indicated to better explore a patient’s decision to end life-sustaining treatments that will result in death. This is a mutual agreement between the physician and the patient that is nonbinding but maintains a respectful understanding of the patient’s desire to revisit goals of treatment and the potential for treatment cessation after a predefined period so that outcomes can be adequately reviewed between the physician and the patient. A TLT allows opportunity for (1) patient reflection, (2) family input, (3) adaptation to a “new normal,” (4) palliation of symptoms and suffering, (5) building trust, (6) goals setting, (7) evaluation of trends and progress, (8) recruiting community resources, and (9) rehabilitation and functional improvement. TLT has been discussed in several arenas of palliative care with a focus on terminal extubation [2,3] and enteric feeding [4,5], but the idea has yet to be translated to capacity clarification after addressing the most dominant aspects of the patient’s suffering. During TLT, if functional, emotional, and social barriers are minimized, then a patient’s joy and purpose for living may be restored and unnecessary hastening of death can potentially be avoided.
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Patient 1 update. In this first case, the doctor negotiated a 1-month TLT to give a chance to treat her depression. They agreed that, once her depression was treated, they would re-address her desire to stop the feeding tube, and she would be allowed to do so if she still wanted to do so. Patient 2 update. In this second case, the patient was willing to go through second-opinion evaluations but did not want to wait a long period of time before making his decisions because he felt he had already been considering this for a long time.
REASSESSMENT Goal setting and reevaluation at the end of the TLT is an important time for group reflection and feedback. New data learned from TLT should be reviewed, and the patient’s progress (or lack thereof) should be assessed. Additional barriers, therefore, can be identified and addressed. Family meetings may be helpful during this period of time, along with social workers who can expertly navigate and resolve any potential lack of community resources Patient 1 update. The first patient felt much less depressed after her TLT, and then did not want to die. She was willing to continue her gastric-tube feeds and try oral eating for pleasure. She did not want a major acceleration of treatment, so she became “do not resuscitate,” but still desired to receive treatment for easily reversible problems. She also did not want any form of intubation, including short-term intubation for acute illnesses. She lived for many more years. Patient 2 update. The second patient again was evaluated by psychiatry, rehabilitation, and palliative care personnel, all of whom deemed the patient to have full decision-making capacity. He felt dissatisfied with his life and wished to prolong his current condition no further. A date to take him off the ventilator was set, and, on that
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day, he was sedated per protocol, and the ventilator was withdrawn. He died comfortably shortly thereafter.
CONCLUSION Patients with high cervical spine injuries face an exceedingly challenging situation and may experience suffering on many different levels. The sudden loss of autonomy alone can be enough to put patients in a state of agony. By offering a TLT in response to patients’ requests to stop treatment, we may be able to empower patients by inviting them to help negotiate their treatment course. It can help facilitate informed decisions by providing the newly debilitated with a better glimpse of what life will really be like for them. Furthermore, a TLT gives the physician a chance to palliate symptoms, assess functional progress, and identify potentially reversible barriers to rational decision making. Most importantly, it allows time for a deeper trust and understanding to develop between the doctor and the patient, which leads to more effective care. TLT may not be applicable in all situations, and patient willingness to engage in this way will certainly vary. Nevertheless, it seems prudent to offer this to patients who are contemplating withdrawal of life-sustaining treatments when there is a reasonable chance for improvement or adaptation over time. Given the permanence of such decisions, a mutually agreeable pause is certainly worth considering.
REFERENCES 1. Quill TE, Holloway R. Time limited trials near the end of life. JAMA 2011;306:1483-1484. 2. Holloway RG, Benesch CG, Burgin WS, et al. Prognosis in decision making in severe stroke. JAMA 2005;294:725-733. 3. Quill TE, Arnold R, Black AL. Discussing treatment preferences with patients who want everything. Ann Int Med 2009;151:345-349. 4. Stroud M, Duncan H, Nightingale J. Guidelines for enteral feeding in adult hospital patients. Gut 2003;52:vii1-vii12. 5. Morss S. Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature. American Journal of Hospice and Palliative Medicine. 2006;23:369-377.
Commentary from Elizabeth Bahr, MA, CCC-SLP and Erin Didde, MA, CCC-SLP Augmentative and Alternative Communication for the Medically Complex Patient Patients who are paralyzed and intubated often find themselves nonverbal and unable to communicate effectively. A percentage of these patients also may have deficits in vision and/or cognitive-linguistic abilities that make communication without speech even more difficult. As a result of an inability to communicate, patients may feel added panic, stress, or fear. Although life-sustaining medical treatments are obviously a primary concern, a patient’s need to communicate should also be viewed
with importance. Not being able to communicate more than just yes or no answers can have a negative impact on the patient’s participation in his or her overall care. Costello [1] states that patients who used a voice output device in a hospital setting felt they were more involved in directing their care and felt more “respected” as a person by their doctors and nurses. To illustrate this, we share the story of a middle-aged woman who presented to an urban rehabilitation hospital after sustaining a brainstem stroke, which resulted in locked-in syndrome. For the 2 months that she was in the acute care hospital, no communication method had been discussed or determined beyond looking up for “yes” and
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closing her eyes for “no.” In short, there had been no opportunity for her to initiate questions, concerns, or comments. Once in the acute rehabilitation setting, she was presented with a way to spell words via scanning. Almost immediately, the patient spelled out “potty.” It was the first time she could initiate a thought or need without being asked. After subsequent questions, she made it clear that she wanted to use the commode, not a diaper or a bed pan. The nursing staff and the family had no idea that this issue had been causing her distress because previously they would only ask “do you need to use the bathroom?” and the patient would only be able to respond “yes” or “no.” The use of augmentative and alternative communication (AAC) is critical to restoring the patient’s ability to participate in her care decisions. Ideally, AAC should require minimal training for the patient, staff, and family when needed for short-term use, such as in intensive care units. Once the best method is determined, signs or instructions should be posted near the patient’s bed so that all staff and visitors know the current communication method [2]. Although the speech therapist may do the initial evaluation and recommend an AAC method, nurses are often the key members in implementing AAC. In their 1992 article, Mitsuda et al [3] expressed the need for nurses and other hospital staff to be educated on AAC for functional communication. During the AAC assessment, the following issues should be taken into consideration: 1. 2. 3. 4. 5. 6. 7.
Alertness level Vision Motor skills (use of hands, head movement, blinks) Positioning Vocabulary needs Cognitive-linguistic abilities (spelling, reading, pictures) Most reliable method of volitional movement (if available)
If a patient only has speech or voice production issues, but all other above considerations are intact, consider using gestures, mouthing, writing, pointing to letters on an alphabet board or typing on a laptop, tablet, or other voice output device. For patients with motor and/or vision impairments, consider partner-assisted auditory scanning for choices or spelling versus yes or no questions alone. Yes or no questions often take a long time to find a specific answer and significantly limit the interaction. A communication partner may need to ask the questions in various ways to ensure reliability of responses. This will help confirm that the patient understands the question and that the responses are being interpreted correctly. However, it will still be unclear if the partner is asking the “right” yes or no questions and the patient is unable to communicate novel thoughts or questions [4]. When looking at partner-assisted scanning, assess the patient to determine a consistent “yes” response such as, for example, eyes up, thumbs up, blink, squeeze hand. If an
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additional signal for “no” cannot be determined, then scanning can still be used with only a “yes” response. Partnerassisted scanning refers to the communication partner giving options or letters to the patient and looking for the “yes” response. For example, instead of asking 20 yes or no questions regarding a patient’s status, the communication partner would ask, “is it something you need, is it about your positioning, is it how you are feeling,” and so forth. and look for the “yes” response from the patient. It is often helpful to review the options for the patient one time through before asking them to respond. Once a “yes” is noted, more-specific options can be given, “is it your head, leg, arm, feet,” and so forth. This same method can be used with spelling by using the AEIOU format, which is a quick way to spell via scanning. For example, “what’s the first letter, is it A to D, E to H, I to N, O to T, U to Z.” When a yes is seen for a given group, the letters are then read until the “yes” is noted for the specific letter choice. After a few letters are provided, the partner can usually guess the word or message. Although this gives the patient more independence in communication, the patient must still rely on a communication partner to give the letters and interpret the responses accurately [5]. The woman with locked-in syndrome used a gaze up as her “yes” response. Her family and medical team were trained in less than 30 minutes on how to use AEIOU scanning for spelling. Boards and directions were posted in the room, and the patient’s husband reported feeling better knowing that he did not have to guess the right questions to ask. The woman also reported feeling more at ease knowing she could initiate communication and not have to rely on someone asking her the correct questions. Another easy, low-tech method for communicating with patients who have motor impairments but intact vision (in at least one eye) is eye gaze. Eye gaze communication boards can be made with the center of a page cutout so that the partner can watch where the patient’s eyes are pointing. The speech therapist can determine how many options can be placed around the board’s edges and how the vocabulary should be represented (symbols, photos, words). The board then is held in front of the patient, and the patient is asked to look at his or her response and hold his or her eyes on the choice for 3 seconds so that the listener can confirm. Vocabulary for these boards can range from body parts, medical status, answers, common questions, people’s names, and other specific needs of the patient. An occupational therapist can assist with determining the most-effective access option. For patients who will require AAC for longer-term use, AAC systems that have synthesized or digitized speech offer other advantages. These systems can allow patients the opportunity to compose messages ahead of time, a quality that facilitates self determination and is an advantage in timeconstrained appointments. Other benefits of using AAC devices include the following:
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Most incorporate a call system or alarm Most allow for environmental controls built in (eg, television, lights) Ability to save common messages or longer messages Most now have computer access (eg, social networking, e-mail) Dynamic screens to allow for more independent access to phrases than communication boards alone
However, these devices require more setup and more training than partner-dependent options, and are likely not practical immediately after new onset of disability or in all care settings. Therefore, both high- and low-tech options should be taught and offered. The woman with locked-in syndrome initially used the paper-based AEIOU communication board but was soon given a synthesized voice communication device after she, her family, and the staff had received adequate training. The device allowed the patient to create and store messages, and access premade messages via a head switch attached to her wheelchair’s headrest or pillow when in bed. She used automatic scanning on the system, and pages were specifically customized for her needs. She still required a staff member or family to set up the equipment and position everything properly for her use. Concrete messages regarding current comfort, needs, and wants appear easier and more common for patients using AAC to communicate with their listeners. Abstract messages or less context-specific items often are harder to discuss when using these and other AAC options, especially if a patient cannot spell at sentence level. Often, a patient with additional cognitive or language deficits is limited to the messages on a given communication board, book, or device that rarely include abstract ideas and less-frequent messages. Other limitations with AAC can include the amount of attention and alertness needed to use the systems, which are sometimes slow and require the patient to wait for his or her choices. Some patients also refuse AAC because they would like to focus only on “getting their voice back” or using mouthing, which may be difficult for others to interpret.
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These issues are critical to take into consideration when determining the reliability of the communication method used when discussing life-sustaining treatments and complex decisions. For example, if a patient is not using their AAC system effectively, then this may be interpreted as limited interest in the discussion or confusion when in fact it may just be fatigue. Closed sets of choices also can make complex discussions more difficult and can easily be misunderstood or misinterpreted. In conclusion, determining communication methods for the paralyzed and intubated patient can be a complex and dynamic task. However, if the patient is currently nonverbal, even if for a short time only, then AAC options should be offered and used when at all possible by all hospital staff to ensure that the patient’s right to be selfdetermining is honored. Although consultation with the speech therapist or assistive technology specialist can be extremely helpful, AAC must be a team effort that involves the patient, staff, and family members. AAC not only increases the patient’s emotional health and sense of control but ensures accuracy of communication, a point that is critical when decisions about the use of life-sustaining treatments are being discussed.
REFERENCES 1. Costello JM. AAC intervention in the intensive care unit: The Children’s Hospital Boston model. Augment Altern Commun 2000;16: 137-153. 2. Garrett KL, Happ MG, Costello J, et al. AAC in the intensive care unit. In: Beukelman D, Yorkston K, Garrett G, eds. Augmentative Communication Strategies for Adults With Acute or Chronic Medical Conditions. Baltimore, MD: Paul H. Brookes Publishing; 2007, 17-57. 3. Mitsuda PM, Baarslag-Benson R, Hazel K, Therriault TM. Augmentative communication in the intensive care unit setting. In: Yorkston KM, ed. Augmentative Communication in the Medical Setting. Tucson, AZ: Communication Skill Builders; 1992, 5-56. 4. Beukelman DR, Mirenda P. Augmentative and Alternative Communication: Supporting Children and Adults With Complex Communication Needs. 3rd ed. Baltimore, MD: Paul H. Brookes Publishing; 2005. 5. Hampson J. Partner Assisted Communication Systems: Let me show you how I communicate. Commun Matters J 2006;20:2-5.
‘I Don’t Want to Live This Way, Doc. Please Take Me Off the Ventilator and Let Me Die.’ Feature Editor Introduction: Kristi L. Kirschner, MD One of the most difficult situations that health care professionals can face is a request to withdraw life-sustaining treatment, particularly when the person making the request has a new-onset life-altering, but not fatal, disabling condition. The story of Dax Cowart has underscored this issue into the hearts and minds of recent generations of many medical students. In 1973, Mr Cowart, a 26-year-old Air Force reserve fighter pilot, sustained extensive total body surface area burns from a gas explosion, which killed his father. While badly injured and lying on the side of the road, Mr Cowart asked the first man who got to him to get him a gun, that he was a “dead man” anyway. Over the subsequent year of painful treatments, Mr Cowart repeatedly requested to forego treatment and be allowed to die. In 1974, with the help of Robert B. White, MD, the psychiatrist consulted to evaluate Mr Cowart’s decision-making capacity, a film, Please Let Me Die, was made, which addressed the difficult issues raised by Mr Cowart’s story. A decade later, an updated and enhanced version, Dax’s Case, was released [1]. Both films have been used extensively in teaching medical ethics classes in medical schools. Stories such as Dax’s have brought into sharp focus the double-edged nature of modern medical technologies, generating a new archetypal narrative pitting patient autonomy against beneficence and medical paternalism. Iterations of the genre flourished in the 1970s and 1980s, with legal cases, and with fictional and made-for-television dramas peppering the airways and headline news. Who can forget the gut-wrenching performance of Richard Dreyfuss, as sculptor Ken Harrison, in Whose Life Is It Anyway?, the Tony award winning play turned into movie [2]. Cocktail party conversations and family dinner table debates percolated. Did Harrison, who acquired quadriplegia in a motor vehicle crash, have a right to refuse medical treatment? What is the difference between refusing medical treatment and committing suicide? What are the roles and obligations of the health care team? A number of notable court cases kept these issues in the public eye in the 1980s and early 1990s, helped by the coverage of popular news sources such as 60 Minutes and People Magazine (eg, Elizabeth Bouvia, Kenneth Bergstedt, David Rivlin, and Larry McAfee, the latter’s life story was also made into a television movie, The Switch, in 1993) [3]. As recently as 2004, this theme again captured national consciousness in the Academy Award winning movie, Million Dollar Baby, with Hilary Swank playing Maggie Fitzgerald, an up-and-coming boxer rendered quadriplegic and ventilator dependent by an underhanded blow in a boxing match [4]. Then there was the media circus that surrounded the more than 100 assisted suicides of Jack Kevorkian, his subsequent trials, which finally ended in 1999 with a conviction after 60 Minutes televised the taped active euthanasia by lethal injection of a patient with amyotrophic lateral sclerosis, Thomas Youk. One could argue that there really is not anything more to discuss here. The courts, bioethicists, and the medical profession are in consensus, that is, that the competent patient has the right to refuse treatment, even life-sustaining treatment. But there in lies the rub, when is someone truly competent? Most would agree that Dax Cowart was not competent when he asked for a gun immediately after his injury. He was likely in a state of biologic and emotional shock. Later he was on high doses of medication and sedatives, and furthermore lacked adequate information about his condition and treatment options. The more difficult question is, when did he regain his competency (or more precisely, his decision-making capacity) for this particular decision? PM&R
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Feature Editor: Kristi Kirschner, MD Clinical Medical Humanities and Bioethics, and Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine; Medical Staff, Schwab Rehabilitation Hospital, Chicago IL. Address correspondence to: K.L.K.; e-mail: [email protected] Disclosure: nothing to disclose
Invited Commentators: Thomas R. Kerkhoff, PhD, ABPP/RP University of Florida, Gainesville, FL Disclosure: nothing to disclose Lester Butt, PhD, ABPP/RP Craig Hospital, Englewood, CO Disclosure: nothing to disclose Robert Yamada Disclosure: nothing to disclose Christopher C. Battaglia, MD Center for Ethics, Humanities and Palliative Care, University of Rochester School of Medicine, Rochester, NY Disclosure: nothing to disclose Joanne Wu, MD Unity Spine Center, Department of Neurology and Rehabilitation, Unity Health System, Rochester, NY Disclosure: nothing to disclose Timothy E. Quill, MD Center for Ethics, Humanities and Palliative Care, University of Rochester School of Medicine, Rochester, NY Disclosure: 3A, paid talks on palliative and end of life care; 4A, royalties from books on palliative and end of life care; 8A, subinvestigator on several grants exploring medical decision-making and end of life care Erin Didde, MA, CCC-SLP Assistive Technology Center, Rehabilitation Institute of Chicago, Chicago IL Disclosure: nothing to disclose Elizabeth Bahr, MA, CCC-SLP Assistive Technology Center, Rehabilitation Institute of Chicago, Chicago IL Disclosure: nothing to disclose Disclosure Key can be found on the Table of Contents and at www.pmrjournal.org
© 2011 by the American Academy of Physical Medicine and Rehabilitation Vol. 3, 968-975, October 2011 DOI: 10.1016/j.pmrj.2011.09.001
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Decision-making capacity involves a number of factors well outlined by others [5]: ● ● ● ● ● ●
Alertness Orientation Ability to communicate choices Understanding of relevant information Appreciation of the situation and its consequences Ability to manipulate information rationally
Applying these standards to people with a new-onset disability can be very challenging. In a classic 1993 New England Journal of Medicine commentary, “When life support is questioned early in the care of patients with cervical-level quadriplegia” [6], the authors (faculty from the University of Washington) advocated for a “time-limited trial of treatment,” that, “decisions about life support in an alert patient with cervical spinal cord injury should, except in rare circumstances, be delayed until the patient appreciates fully what life will be like after a full course of rehabilitation [6].” For this column, I have asked several expert commentators to help us tackle the following questions: 1. How does one judge whether the person has a sufficient understanding of his or her condition to refuse life-sustaining therapy after a new onset disability? 2. Is there a time frame when a refusal of treatment should not be honored? 3. What are ways in which communication can be optimized when a person is paralyzed and intubated, such as patients often are in the intensive care unit? 4. What can we learn from people who questioned whether their lives would be worth living and ultimately changed their minds [7]?
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One group commentary is provided by Thomas R. Kerkhoff, PhD, ABPP/RP, University of Florida, Gainesville, Florida, Lester Butt, PhD, ABPP/RP, Craig Hospital, Englewood, Colorado, and Mr Robert Yamada. The second group commentary is provided by Christopher C. Battaglia, MD, Fellow, Hospice and Palliative Care, University of Rochester School of Medicine, Center for Ethics, Humanities and Palliative Care Rochester, New York; Joanne Wu, MD, Unity Spine Center, Department of Neurology and Rehabilitation, Unity Health System, Rochester, New York, and Timothy E. Quill, MD, professor of medicine, psychiatry and medical Humanities, Center for Ethics, Humanities and Palliative Care, University of Rochester School of Medicine, Rochester, New York. The third commentary is provided by Erin Didde, MA, CCC-SLP, and Elizabeth Bahr, MA, CCC-SLP, both of the Assistive Technology Center, Rehabilitation Institute of Chicago, Chicago, Illinois. As always, we invite you to write in with your reactions and suggestions for future columns.
REFERENCES 1. Dax’s Case. Who Should Decide? Available at http://www.filmakers. com/index.php?a⫽filmDetail&filmID⫽157. Accessed September 11, 2011. 2. Clark B. Whose Life Is It Anyway? A Full-Length Play. Chicago: Dramatic Publishing; 1974. 3. Kirschner KL. Calling it quits: When patients or proxies request to withdraw or withhold life-sustaining treatment after spinal cord injury, special ethics issue. Top Spinal Cord Inj Rehabil 2008;13:30-43. 4. Kirschner KL. Depictions of physical suffering: Eastwood’s Baby hits below the belt [editorial]. Chicago Tribune. March 6, 2005:Perspectives Section: 1, 7. 5. Applebaum PS, Grisso T. Assessing patients’ capacities to consent to treatment. N Engl J Med 1988;319:1635-1638. 6. Patterson DR, Miller-Perrin C, McCormick TR, et al. When life-support is questioned early in the care of patients with cervical-level quadriplegia. N Engl J Med 1993;328:506-509. 7. Facing Disability. Available at http://www.facingdisability.com/ questions/feelings-/did-you-ever-consider-suicide. Accessed September 11, 2011.
Commentary from Thomas R. Kerkhoff, ABPP/RP, Lester Butt, ABPP/RP, and Robert Yamada We are pleased to weigh in on revisiting these difficult issues, which remain as unsettled today as they were in the latter decades of the previous century. The first two of us (T.K., L.B.) are board-certified rehabilitation psychologists, each with 30⫹ years of experience in spinal cord injury (SCI). Between us, we have cared for more than 75 ventilator-dependent patients with SCI. Of these patients, fewer than 2% have chosen to withdraw from treatment, although roughly 80% have raised the question of doing so. We invited Mr Robert Yamada to be a coauthor. As a man who sustained a SCI in 2009 at the age of 23, Mr Yamada augments the commentary by adding a personal perspective.
In this commentary, we address 2 fundamental issues: (1) quality of life framed in the context of a health care system focused on preserving life, and (2) the time-limited trial (TLT) of treatment approach to decision making. To ground our discussion, we use 2 distinct case examples. The first (unpublished) case example is that of a 63-year-old man who questioned continued treatment, agreed to a TLT of therapy and, after a year, chose to discontinue the ventilator. (This 30-year-old unpublished case has substantially been deidentified; in addition, a release for educational purposes was secured subsequent to the events reported.) The second example is Mr Yamada’s story, which illustrates a common scenario in which the question of withdrawal of treatment
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was never explicitly discussed but intermittently and privately considered. In approaching these issues, it is important to discuss the issue of bias in both health care and society. On the one hand, health care professionals are exquisitely trained to protect and preserve human life. Medicine’s technologic prowess symbolizes the U.S. health care system and has surely allowed individuals to survive, who, in earlier decades, would have died. On the other hand, our society has come to value the concept of quality of life, as defined by the individual. A catastrophic injury and attendant disability can threaten foundational tenets of perceived quality of life. There is no easy universal position regarding the right of individuals (or valid surrogates and/or proxies) to make decisions about treatment intensity (or withdrawal of such). In reviewing our experiences, we (T.K., L.B.) have witnessed the disquieting nature and resultant compromised autonomy when decisions are made unilaterally by health care professionals. Such decisions, often grounded in the patient’s “best interest,” often incorrectly assume that patients are emotionally unable to make decisions in the affective throes of a new-onset catastrophic disability. Indeed, it is a daunting task to make a sufficiently informed decision under such circumstances but not impossible. In general, however, TLTs of treatments in such circumstances can be very helpful (as illustrated in the first case below) [1]. Consider, for example, the pressure-filled environment of the emergency department. If the patient is alert and cognitively coherent, despite experiencing the new onset of disability, or a surrogate makes decisions for the incapacitated patient from the perspective of substituted judgment, then the possibility of discontinuing treatment should be considered, when assuming that a focused discussion of decisional consequences ensues. The right to make adequately informed medical decisions should be honored, no matter the treatment environment, unless compelling reasons not to do so are offered [2,3]. With the passage of time, however, questions about informed consent that arise in the acute care environment are often rendered moot in the postacute or outpatient setting. Individuals who initially consider refusing life-sustaining interventions often reconsider as they experience life with disability. When the acute crisis passes, it is easier to consider alternative courses of action, and their consequences. The following examples illustrate 2 men, both with ventilatordependent SCIs who arrive at very different decisions. The first patient was a 63-year-old newly retired school principal who sustained a high cervical SCI in a bicycling accident, with resultant ventilator dependence. Despite multiple efforts to wean him off full-time ventilation, he continued to require full ventilator support (this was before phrenic nerve pacers). The patient and his wife had explored and embraced the issue of termination of life support and quality of life via literature from the Hemlock Society before the
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injury [4]. After having made the request to terminate ventilator support on the acute medicine service with no sympathetic ear, the patient renewed his request (with his wife’s support) upon admission to the rehabilitation center. The issue was discussed at length and put before the medical center’s ethics committee for deliberation. The committee recommended that the patient consider living a year with his wife in the community after successfully completing his rehabilitation program. This TLT was intended to address the issue of life experience adequately influencing informed decision making. Fortunately, the patient had good health insurance and was provided with a sufficient level of support in the home and the community to make this option feasible. He and his wife agreed with the plan, and he was discharged home with a promise to revisit the request in 1 year. At the end of that year, the patient and wife returned and again pressed their desire to have the ventilator removed. The patient had actively engaged in everyday living, with weekly excursions into the community, by all measures a valid community integration experience. In keeping with the earlier agreement, the medical team agreed to admit the patient and disconnect the ventilator, with one caveat. If the patient was able to breathe on his own, then no further assistance to terminate life would be provided. Ironically, the patient died during a seizure the night before the planned ventilator removal. A do not resuscitate order had been in place and was respected. In this example, the patient’s clearly articulated wishes were honored after extensive and repeated examination by the health care team and members of the ethics committee to ensure decisional capacity and adequate postdisability life experience to ensure informed consent. The patient’s philosophical values and beliefs were called into question and successfully defended by the patient, with his wife in agreement. Thus, the health care team’s concerns that impulsive, ill-conceived emotional pressures would unduly affect decision making were effectively countered. Importantly, adherence to the ethical principle of respect for autonomy and the settling of issues surrounding beneficence and nonmaleficence was upheld in the decision-making process. As a counter example, Mr Yamada describes a very different experience in which the issue of withdrawal of the ventilator was never overtly raised or discussed. Mr Yamada was 23 years old when he sustained a cervical SCI in a diving accident in 2009. At no time during his acute and rehabilitation course did he raise the issue of discontinuing ventilator support, nor as a result was it ever brought up by his treatment team. His rehabilitation focused upon his acquiring and mastering an adaptive lifestyle. Mr Yamada recalls a persistent hope that he could eventually be weaned from his ventilator throughout his rehabilitation admission, but he never directly discussed the possibility of such with his treatment team. Indeed, he recalls thoughts of possibly terminating ventilator support but kept those thoughts private
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and felt that they tended to be transient. Four months after his injury, he had a diaphragmatic pacer placed, which is now activated during the day, with mechanical ventilator support at night. He is now living in his parents’ home and attending college. He too is fortunate to have adequate funding to support hired caregivers to augment his parents’ assistance throughout the 24-hour day. In reflecting upon his personal experience and lack of desire to have overt discussions about the ventilator early after his injury, Mr Yamada believes that he was able to maintain hope that he could eventually be weaned, particularly as new technologies emerge. With time, he was able to eventually adapt to his condition with the active, ongoing support of family, community, friends, and a male cousin (confidant), and with alternate week sessions with an SCI-experienced psychologist. He does not feel that failing to raise the issue was a mistake or that the health care team should feel obliged to engage in such a conversation. This case example finds a young man at a very different place in his life trajectory than the retired school principal. Decisional capacity in these 2 individuals was not an issue. The acute care environment that reflected “essential dependence” [5] triggered dissimilar reactions in these 2 individuals. In the case of the older man, the ventilator presented a perceived immutable barrier to achieving postretirement quality of life, whereas the younger individual initially considered the ventilator (and phrenic pacer) as temporary supports and, over time, as basic necessities for everyday activities. Absent substantive emergence of treatment-withdrawal issues by the patient and his or her family, this fundamental issue of discontinuing ventilator support does not need to be addressed. A common thread in these 2 narratives is the presence of strong family support for both individuals. In the case of the retired school principal, his wife shared his beliefs regarding quality of life. She also was able to actively provide care in the home to explore life with disability. Her perspective was that she would support her husband’s wishes without reservation, as she believed he would if their positions were reversed. The caregiver burden, in her opinion, was sustainable as long as quality of life was maintained. Mr Yamada, similar to the
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retired principal, also had excellent family and social support. Unfortunately this is not true for all patients. In our experience (T.K., L.B.), the small percentage of individuals that opt for termination of ventilator support is disproportionately represented by patients with long-standing emotional problems, often lack adequate caregiver support, often facing life in an extended care facility or maintain a corrosive vision of disability. The societal problem of sustained caregiving in catastrophic cases to maintain community-based living without adequate family support has yet to be sufficiently addressed in our health care system. Medicaid HomeBased Care waivers are fraught with problematic qualification criteria, insufficient resources, long wait lists, and lawsuits demanding access. The legal challenges to recent health care reforms do not bode well for a remedy in the near term. In closing, our resilient young man found strong community and family support sufficient to make the decision to continue onward, with identified life goals yet to be achieved and possibilities to be explored. Our older man decided otherwise. One wonders if seniors who experience new-onset chronic disability are faced with a challenge of personal redefinition. Clinging to preinjury contingent life goals that depend upon maintaining personally acceptable levels of health and functional status may be naive, especially after experiencing success in work and social realms before the injury. For the clinicians working with individuals with such catastrophic life changes, the challenge will remain to assist them in exploring personally relevant meaning within a technology-supported existence.
REFERENCES 1. Patterson DR, Miller-Perrin C, McCormick TR, et al. When life-support is questioned early in the care of patients with cervical level quadriplegia. N Engl J Med 1993;328:506-509. 2. Butt L, Scofield G. The bright line reconsidered: The issue of treatment discontinuation in ventilator-dependent tetraplegia. Top Spinal Cord Inj Rehabil 1997;2:85-94. 3. Butt L, Rothman J. Death can be proud. HEC Forum 1995;7:81-93. 4. Fujimura LE, Weis DM, Cochran JR. Suicide: Dynamics and implications for counseling. J Couns Dev 1985;63:612-615. 5. Stenson K, Chen N, Tansey K, et al. Informed consent and phase I research in spinal cord injury. PM R 2010;2:664-670.
Commentary from Christopher C. Battaglia, MD, Joanne Wu, MD, Timothy E. Quill, MD High cervical spine injuries often result in severe debilitation and reliance on artificial life support for ongoing survival. When such patients request cessation of life-sustaining treatments, their capacity for making such a decision warrants evaluation. In the acute phase of injury and rehabilitation, when a patient’s medical burden and functional impairment are at their worst, a patient’s decision-making ability may be compromised by a number of factors. The challenge thus presents itself: How do we
assess capacity to make major life-and-death decisions in the early phase of new-onset severe disability? How do we honor autonomy while preventing premature and underinformed treatment-withdrawal decisions? For the sake of this discussion, we will exclude patients who lack capacity and are very unlikely to regain it, and those who are terminally ill from other diseases. Our initial goals in this setting are to (1) preserve patient autonomy while preventing hasty treatment withdrawal deci-
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sions, (2) facilitate fully informed patient decision making, and (3) maintain and enhance the doctor-patient relationship by honoring a commitment to ultimately follow-through with patients’ fully informed decisions. After a thorough patient evaluation, we suggest negotiation of a time-limited trial (TLT) [1] of intensified palliative treatment followed by a reassessment phase before making a serious treatment cessation decision. To help frame our commentary, we have chosen 2 adapted cases: Patient 1. A 70-year-old woman with a cervical spinal stroke and dysphagia is experiencing depression. She does not have a tracheostomy and requires no assisted ventilation. She wants to die and not be sustained with a feeding tube. Patient 2. A 30-year-old man has become quadriplegic from a motorcycle accident and has been ventilator dependent for 5 years. He has finished his rehabilitation course and is fully adapted to his neurologic and functional level. He now wants to be allowed to die by stopping ventilator support.
MULTIDISCIPLINARY ASSESSMENT Before decision-making ability can be fully assessed, attention should first focus on the potentially reversible aspects of the patients’ suffering and the degree to which this suffering may be influencing their decision making. In addition to physical symptoms such as pain, nausea, constipation, dyspnea, and dysphagia, patients with a new cervical spine injury may also be dealing with emotional disturbances such as anxiety, depression, anger, guilt, or fear. One patient may lament the fact that he or she will never walk again, whereas another is more concerned about how this illness will impact his or her family. For some patients who lack adequate social support, much suffering is derived from intense feelings of aloneness and the prospect of lifelong institutionalized living. Severe suffering of any kind can bring about a state of desperation in which the desire to escape can become the primary motivation, thereby superseding higher levels of decision making. It, therefore, is essential to try and fully understand the many potential dimensions of each individual patient’s suffering and then to carefully tailor palliative interventions. This multidimensional intervention may also lessen the patient’s aloneness, strengthen rapport with the health care team, and help build trust. With suffering minimized to the extent possible, we may theoretically be able to unfetter the patient’s true intentions. A careful assessment of the patient’s mental status is at the core of a detailed evaluation of the patient’s capacity for decision making. Alertness and orientation can often be affected by delirious states from acute toxic metabolic derangements and from oversedation related to pain medications. Once alertness is maximized, it is important to focus on the patient’s ability to comprehend and communicate about his or her state of health and their treatment options. Recruit-
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ment of social support is also essential, including (1) family and loved ones, (2) spiritual and religious ties, (3) other core social relationships (work, hobbies, interests). As part of this overall psychosocial assessment, understanding the patient’s personal values and cultural background also is key. Language barriers and medical literacy also should be assessed. By gathering a better understanding of the patient’s mind, body, and spirit, physicians can better assess the patient’s psychological state and motivations. Consultation with a psychologist, neuropsychologist, or psychiatrist may help explore the patient’s potential coping and adaptation skills, assess for underlying disorders, such as depression and anxiety, and better understand his or her hopes and fears. All of these have an impact on determining the patient’s capacity to make medical decisions. Patient 1 update. The assessment of this patient’s mental status found her to be profoundly depressed, such that she could not see her situation clearly and could not imagine a future for herself. Patient 2 update. This patient’s assessment showed that he was thinking clearly and was not clinically depressed. He had, in fact, been thinking about and talking about stopping treatment for several years. Two independent psychiatric evaluations confirmed his full capacity for decision making, and the absence of clinical depression or anxiety. A palliative care evaluation found no unaddressed symptoms and also found his cognition to be clear. A physiatry rehabilitation consult found no acute decline in function or progression of chronic medical problems.
REASONS TO LIVE, REASONS TO DIE After a careful multidisciplinary assessment, negotiating TLT may be indicated to better explore a patient’s decision to end life-sustaining treatments that will result in death. This is a mutual agreement between the physician and the patient that is nonbinding but maintains a respectful understanding of the patient’s desire to revisit goals of treatment and the potential for treatment cessation after a predefined period so that outcomes can be adequately reviewed between the physician and the patient. A TLT allows opportunity for (1) patient reflection, (2) family input, (3) adaptation to a “new normal,” (4) palliation of symptoms and suffering, (5) building trust, (6) goals setting, (7) evaluation of trends and progress, (8) recruiting community resources, and (9) rehabilitation and functional improvement. TLT has been discussed in several arenas of palliative care with a focus on terminal extubation [2,3] and enteric feeding [4,5], but the idea has yet to be translated to capacity clarification after addressing the most dominant aspects of the patient’s suffering. During TLT, if functional, emotional, and social barriers are minimized, then a patient’s joy and purpose for living may be restored and unnecessary hastening of death can potentially be avoided.
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Patient 1 update. In this first case, the doctor negotiated a 1-month TLT to give a chance to treat her depression. They agreed that, once her depression was treated, they would re-address her desire to stop the feeding tube, and she would be allowed to do so if she still wanted to do so. Patient 2 update. In this second case, the patient was willing to go through second-opinion evaluations but did not want to wait a long period of time before making his decisions because he felt he had already been considering this for a long time.
REASSESSMENT Goal setting and reevaluation at the end of the TLT is an important time for group reflection and feedback. New data learned from TLT should be reviewed, and the patient’s progress (or lack thereof) should be assessed. Additional barriers, therefore, can be identified and addressed. Family meetings may be helpful during this period of time, along with social workers who can expertly navigate and resolve any potential lack of community resources Patient 1 update. The first patient felt much less depressed after her TLT, and then did not want to die. She was willing to continue her gastric-tube feeds and try oral eating for pleasure. She did not want a major acceleration of treatment, so she became “do not resuscitate,” but still desired to receive treatment for easily reversible problems. She also did not want any form of intubation, including short-term intubation for acute illnesses. She lived for many more years. Patient 2 update. The second patient again was evaluated by psychiatry, rehabilitation, and palliative care personnel, all of whom deemed the patient to have full decision-making capacity. He felt dissatisfied with his life and wished to prolong his current condition no further. A date to take him off the ventilator was set, and, on that
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day, he was sedated per protocol, and the ventilator was withdrawn. He died comfortably shortly thereafter.
CONCLUSION Patients with high cervical spine injuries face an exceedingly challenging situation and may experience suffering on many different levels. The sudden loss of autonomy alone can be enough to put patients in a state of agony. By offering a TLT in response to patients’ requests to stop treatment, we may be able to empower patients by inviting them to help negotiate their treatment course. It can help facilitate informed decisions by providing the newly debilitated with a better glimpse of what life will really be like for them. Furthermore, a TLT gives the physician a chance to palliate symptoms, assess functional progress, and identify potentially reversible barriers to rational decision making. Most importantly, it allows time for a deeper trust and understanding to develop between the doctor and the patient, which leads to more effective care. TLT may not be applicable in all situations, and patient willingness to engage in this way will certainly vary. Nevertheless, it seems prudent to offer this to patients who are contemplating withdrawal of life-sustaining treatments when there is a reasonable chance for improvement or adaptation over time. Given the permanence of such decisions, a mutually agreeable pause is certainly worth considering.
REFERENCES 1. Quill TE, Holloway R. Time limited trials near the end of life. JAMA 2011;306:1483-1484. 2. Holloway RG, Benesch CG, Burgin WS, et al. Prognosis in decision making in severe stroke. JAMA 2005;294:725-733. 3. Quill TE, Arnold R, Black AL. Discussing treatment preferences with patients who want everything. Ann Int Med 2009;151:345-349. 4. Stroud M, Duncan H, Nightingale J. Guidelines for enteral feeding in adult hospital patients. Gut 2003;52:vii1-vii12. 5. Morss S. Enteral and parenteral nutrition in terminally ill cancer patients: a review of the literature. American Journal of Hospice and Palliative Medicine. 2006;23:369-377.
Commentary from Elizabeth Bahr, MA, CCC-SLP and Erin Didde, MA, CCC-SLP Augmentative and Alternative Communication for the Medically Complex Patient Patients who are paralyzed and intubated often find themselves nonverbal and unable to communicate effectively. A percentage of these patients also may have deficits in vision and/or cognitive-linguistic abilities that make communication without speech even more difficult. As a result of an inability to communicate, patients may feel added panic, stress, or fear. Although life-sustaining medical treatments are obviously a primary concern, a patient’s need to communicate should also be viewed
with importance. Not being able to communicate more than just yes or no answers can have a negative impact on the patient’s participation in his or her overall care. Costello [1] states that patients who used a voice output device in a hospital setting felt they were more involved in directing their care and felt more “respected” as a person by their doctors and nurses. To illustrate this, we share the story of a middle-aged woman who presented to an urban rehabilitation hospital after sustaining a brainstem stroke, which resulted in locked-in syndrome. For the 2 months that she was in the acute care hospital, no communication method had been discussed or determined beyond looking up for “yes” and
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closing her eyes for “no.” In short, there had been no opportunity for her to initiate questions, concerns, or comments. Once in the acute rehabilitation setting, she was presented with a way to spell words via scanning. Almost immediately, the patient spelled out “potty.” It was the first time she could initiate a thought or need without being asked. After subsequent questions, she made it clear that she wanted to use the commode, not a diaper or a bed pan. The nursing staff and the family had no idea that this issue had been causing her distress because previously they would only ask “do you need to use the bathroom?” and the patient would only be able to respond “yes” or “no.” The use of augmentative and alternative communication (AAC) is critical to restoring the patient’s ability to participate in her care decisions. Ideally, AAC should require minimal training for the patient, staff, and family when needed for short-term use, such as in intensive care units. Once the best method is determined, signs or instructions should be posted near the patient’s bed so that all staff and visitors know the current communication method [2]. Although the speech therapist may do the initial evaluation and recommend an AAC method, nurses are often the key members in implementing AAC. In their 1992 article, Mitsuda et al [3] expressed the need for nurses and other hospital staff to be educated on AAC for functional communication. During the AAC assessment, the following issues should be taken into consideration: 1. 2. 3. 4. 5. 6. 7.
Alertness level Vision Motor skills (use of hands, head movement, blinks) Positioning Vocabulary needs Cognitive-linguistic abilities (spelling, reading, pictures) Most reliable method of volitional movement (if available)
If a patient only has speech or voice production issues, but all other above considerations are intact, consider using gestures, mouthing, writing, pointing to letters on an alphabet board or typing on a laptop, tablet, or other voice output device. For patients with motor and/or vision impairments, consider partner-assisted auditory scanning for choices or spelling versus yes or no questions alone. Yes or no questions often take a long time to find a specific answer and significantly limit the interaction. A communication partner may need to ask the questions in various ways to ensure reliability of responses. This will help confirm that the patient understands the question and that the responses are being interpreted correctly. However, it will still be unclear if the partner is asking the “right” yes or no questions and the patient is unable to communicate novel thoughts or questions [4]. When looking at partner-assisted scanning, assess the patient to determine a consistent “yes” response such as, for example, eyes up, thumbs up, blink, squeeze hand. If an
REQUESTS TO QUIT LIFE-SAVING TREATMENT
additional signal for “no” cannot be determined, then scanning can still be used with only a “yes” response. Partnerassisted scanning refers to the communication partner giving options or letters to the patient and looking for the “yes” response. For example, instead of asking 20 yes or no questions regarding a patient’s status, the communication partner would ask, “is it something you need, is it about your positioning, is it how you are feeling,” and so forth. and look for the “yes” response from the patient. It is often helpful to review the options for the patient one time through before asking them to respond. Once a “yes” is noted, more-specific options can be given, “is it your head, leg, arm, feet,” and so forth. This same method can be used with spelling by using the AEIOU format, which is a quick way to spell via scanning. For example, “what’s the first letter, is it A to D, E to H, I to N, O to T, U to Z.” When a yes is seen for a given group, the letters are then read until the “yes” is noted for the specific letter choice. After a few letters are provided, the partner can usually guess the word or message. Although this gives the patient more independence in communication, the patient must still rely on a communication partner to give the letters and interpret the responses accurately [5]. The woman with locked-in syndrome used a gaze up as her “yes” response. Her family and medical team were trained in less than 30 minutes on how to use AEIOU scanning for spelling. Boards and directions were posted in the room, and the patient’s husband reported feeling better knowing that he did not have to guess the right questions to ask. The woman also reported feeling more at ease knowing she could initiate communication and not have to rely on someone asking her the correct questions. Another easy, low-tech method for communicating with patients who have motor impairments but intact vision (in at least one eye) is eye gaze. Eye gaze communication boards can be made with the center of a page cutout so that the partner can watch where the patient’s eyes are pointing. The speech therapist can determine how many options can be placed around the board’s edges and how the vocabulary should be represented (symbols, photos, words). The board then is held in front of the patient, and the patient is asked to look at his or her response and hold his or her eyes on the choice for 3 seconds so that the listener can confirm. Vocabulary for these boards can range from body parts, medical status, answers, common questions, people’s names, and other specific needs of the patient. An occupational therapist can assist with determining the most-effective access option. For patients who will require AAC for longer-term use, AAC systems that have synthesized or digitized speech offer other advantages. These systems can allow patients the opportunity to compose messages ahead of time, a quality that facilitates self determination and is an advantage in timeconstrained appointments. Other benefits of using AAC devices include the following:
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Most incorporate a call system or alarm Most allow for environmental controls built in (eg, television, lights) Ability to save common messages or longer messages Most now have computer access (eg, social networking, e-mail) Dynamic screens to allow for more independent access to phrases than communication boards alone
However, these devices require more setup and more training than partner-dependent options, and are likely not practical immediately after new onset of disability or in all care settings. Therefore, both high- and low-tech options should be taught and offered. The woman with locked-in syndrome initially used the paper-based AEIOU communication board but was soon given a synthesized voice communication device after she, her family, and the staff had received adequate training. The device allowed the patient to create and store messages, and access premade messages via a head switch attached to her wheelchair’s headrest or pillow when in bed. She used automatic scanning on the system, and pages were specifically customized for her needs. She still required a staff member or family to set up the equipment and position everything properly for her use. Concrete messages regarding current comfort, needs, and wants appear easier and more common for patients using AAC to communicate with their listeners. Abstract messages or less context-specific items often are harder to discuss when using these and other AAC options, especially if a patient cannot spell at sentence level. Often, a patient with additional cognitive or language deficits is limited to the messages on a given communication board, book, or device that rarely include abstract ideas and less-frequent messages. Other limitations with AAC can include the amount of attention and alertness needed to use the systems, which are sometimes slow and require the patient to wait for his or her choices. Some patients also refuse AAC because they would like to focus only on “getting their voice back” or using mouthing, which may be difficult for others to interpret.
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These issues are critical to take into consideration when determining the reliability of the communication method used when discussing life-sustaining treatments and complex decisions. For example, if a patient is not using their AAC system effectively, then this may be interpreted as limited interest in the discussion or confusion when in fact it may just be fatigue. Closed sets of choices also can make complex discussions more difficult and can easily be misunderstood or misinterpreted. In conclusion, determining communication methods for the paralyzed and intubated patient can be a complex and dynamic task. However, if the patient is currently nonverbal, even if for a short time only, then AAC options should be offered and used when at all possible by all hospital staff to ensure that the patient’s right to be selfdetermining is honored. Although consultation with the speech therapist or assistive technology specialist can be extremely helpful, AAC must be a team effort that involves the patient, staff, and family members. AAC not only increases the patient’s emotional health and sense of control but ensures accuracy of communication, a point that is critical when decisions about the use of life-sustaining treatments are being discussed.
REFERENCES 1. Costello JM. AAC intervention in the intensive care unit: The Children’s Hospital Boston model. Augment Altern Commun 2000;16: 137-153. 2. Garrett KL, Happ MG, Costello J, et al. AAC in the intensive care unit. In: Beukelman D, Yorkston K, Garrett G, eds. Augmentative Communication Strategies for Adults With Acute or Chronic Medical Conditions. Baltimore, MD: Paul H. Brookes Publishing; 2007, 17-57. 3. Mitsuda PM, Baarslag-Benson R, Hazel K, Therriault TM. Augmentative communication in the intensive care unit setting. In: Yorkston KM, ed. Augmentative Communication in the Medical Setting. Tucson, AZ: Communication Skill Builders; 1992, 5-56. 4. Beukelman DR, Mirenda P. Augmentative and Alternative Communication: Supporting Children and Adults With Complex Communication Needs. 3rd ed. Baltimore, MD: Paul H. Brookes Publishing; 2005. 5. Hampson J. Partner Assisted Communication Systems: Let me show you how I communicate. Commun Matters J 2006;20:2-5.