Life values of elderly people suffering from incurable cancer: A literature review

G Model PEC 5681 No. of Pages 9

Patient Education and Counseling xxx (2017) xxx–xxx

Contents lists available at ScienceDirect

Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

Review article

Life values of elderly people suffering from incurable cancer: A literature review Anne Ebenaua , Jelle van Gurpa,b , Jeroen Hasselaara,* a b

Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Center, Nijmegen, Netherlands Department of IQ Healthcare, Section Ethics, Radboud University Nijmegen Medical Center, Nijmegen, Netherlands

A R T I C L E I N F O

A B S T R A C T

Article history: Received 27 October 2016 Received in revised form 28 April 2017 Accepted 21 May 2017

Objective: Due to aging Western societies, older patients suffering from incurable cancer will present themselves more often to health care professionals. To be of service to these severely ill elderly patients, more knowledge is needed on which life values are guiding them through their last phases of life. This review aims to describe which life values play an important part in the lives of elderly people suffering from incurable cancer. Methods: We conducted a literature review with a structured search to identify empirical studies (January 1950-February 2016) using six databases. Results: The analysis of thirty articles resulted in the extensive description of eight life values: comfort, continuity, humility, dignity, honesty, optimism, hope and preparedness. Conclusion: Elderly patients suffering from incurable cancer use the abovementioned life values to give meaning to a life interrupted by disease. Furthermore, these values will play a role in communication and decision-making. Practice implications: Knowledge about life values can help professionals discuss and clarify personal preferences with elderly patients suffering from incurable cancer, contributing to more personalized care and treatment. Communication should focus on to what extent patient empowerment, life-prolonging treatment and the involvement of the patient's supporting systems suit the wishes of these patients. © 2017 Elsevier B.V. All rights reserved.

Keywords: End-of-life Palliative care Cancer Elderly Life values Literature review

Contents 1. 2.

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Introduction . . . . . . . . . . . . . . . . . . Methods . . . . . . . . . . . . . . . . . . . . . Search strategy . . . . . . . . . . 2.1. Selection . . . . . . . . . . . . . . . 2.2. Quality assessment . . . . . . . 2.3. Data synthesis . . . . . . . . . . . 2.4. Results . . . . . . . . . . . . . . . . . . . . . . Study characteristics . . . . . . 3.1. 3.2. Comfort . . . . . . . . . . . . . . . . Continuity . . . . . . . . . . . . . . 3.3. Personal continuity 3.3.1. Social continuity . . 3.3.2. Humility . . . . . . . . . . . . . . . 3.4. 3.4.1. To loved ones . . . .

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* Corresponding author at: Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Center, P.O. Box 9101 (internal code 549), 6500 HB Nijmegen, Netherlands. E-mail addresses: [email protected] (A. Ebenau), [email protected] (J. van Gurp), [email protected] (J. Hasselaar). http://dx.doi.org/10.1016/j.pec.2017.05.027 0738-3991/© 2017 Elsevier B.V. All rights reserved.

Please cite this article in press as: A. Ebenau, et al., Life values of elderly people suffering from incurable cancer: A literature review, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.05.027

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3.4.2. To health care professionals . . . . . . . . . Dignity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5. Honesty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6. Optimism and hope . . . . . . . . . . . . . . . . . . . . . . 3.7. Preparedness . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8. Discussion and conclusion . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1. Strengths and limitations of this study 4.1.1. 4.2. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Future research . . . . . . . . . . . . . . . . . . . 4.2.1. Practice implications . . . . . . . . . . . . . . . . . . . . . 4.3. Competing interests . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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1. Introduction As a consequence of aging, elderly people suffering from cancer are a prominent and expanding patient group in Western societies [1–4]. However, knowledge on (the treatment of) cancer in elderly people is limited, as cancer research usually focuses on traditional outcomes, such as survival and disease response, in younger populations. Research that takes the particularities of elderly patients with cancer e.g., physical vulnerability, cognitive decline, co-morbidity, different social contexts, generational characteristics and particular life perspectives into account, is largely lacking [3,5]. Additionally, the gathering of first hand empirical data is even more hindered by the patients’ frailty at the final stages of terminal disease and the professional caregivers being protective of their frail, older patients [6]. The available literature suggests differences in quality of life (QOL) between elderly and younger patients suffering from incurable cancer, but this remains inconclusive. Elderly patients with advanced cancer are reported to experience a lower illness burden than younger patients with incurable cancer on palliative care dimensions: general physical well-being [7–11] and pain [7,12], psychological and emotional health (e.g., being less depressed) [7–10,13–17], social health [7,13] and spiritual and existential issues [8,9]. Additionally, the financial burden appeared to be lower in elderly patients compared to patients younger than fifty years of age [7,13]. Other studies, however, state that different age groups have the same or few differences in ratings on physical [18,19] psychosocial [19,20] and overall QOL [21]. More particularly, elderly patients with incurable cancer equally experience depression and anxiety about the future [15,22]. Awareness of a patient’s life values by both patient and health care professionals (HCPs) is needed to design well-tailored care for the elderly patient [23]. In this review, life values are interpreted as desirable states, objects, goals or behaviors that a person uses to reflect on and evaluate personal actions and life events, as well as the actions and lives of others. Life values transcend specific situations. They form the base of normative standards that persons use to judge and choose among alternative modes of behavior. [24– 26]. Communication about these often-latent life values is, however, complex. Self-reflection, analytic and cognitive competence, a certain vocabulary and the input as well as the sensitivity of others determine whether and how these values are recognized and available for use [27]. Explicit communication about life values requires a shared decision making process that is not only focused on a 'logic of a choice' but also on understanding patients' experiences of the 'messiness' of being sick: being vulnerable, dependent and feeling ill [28]. The literature shows, however, that congruency between the patients’ and HCPs’ ideas about treatment choices and the way that care is delivered is not a common practice [29–31]. More openness, knowledge and communication about the

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life values, fears and desires of patients could improve person or patient-centered care [32,33]. Patient-centered care is considered to improve quality of life and well-being, self-efficacy, adherence to medications, and improved chronic disease control, without imposing higher costs [34]. This article provides a literature review on the state of knowledge on life values guiding and impacting the lives and lived experiences of elderly people suffering from incurable cancer. This paper’s research question is: Which life values play an important part in the lives of elderly people (65) suffering from incurable cancer? We aim to provide professional caregivers working closely with elderly patients with incurable cancer with insights into the patients' life values. This knowledge of life values is expected to help professionals look beyond a biomedical diagnosis alone, gain a more vivid picture of the individual patient, and know more about his/her lived experience and goals of care, which can balance previous assumptions by health care professionals [35]. Health care professionals' attention for life values may contribute to better disease-related outcomes and quality of life, as well as less unwanted care and procedures. 2. Methods 2.1. Search strategy In February 2016, a structured literature search for articles on the life values of elderly patients with incurable cancer was conducted in six online databases (CINAHL, Embase, PubMed, Web of Science, MEDLINE and PsycINFO) and was centered around four themes: 1) palliative/terminal; 2) elderly people; 3) cancer, and 4) life values or perspectives. The search terms can be found in Appendix A. The search focused on the period from 1950 to February 2016, and only articles written in the English language were included. 2.2. Selection Studies were included if the research populations consisted of people who were 65 years old or older. Only empirical research was included, as it represents the actual expressions of life values by elderly patients with incurable cancer. Articles were excluded when they: 1) were about curable cancer (care); 2) did not originate from European countries, except for countries that share a cultural tradition, such as US, Canada and Israel; 3) lacked clear references to age or cancer; 4) contained only third-person perspectives; 5) focused on cost-effectiveness and; 7) n = 1 studies. The first two authors independently screened the titles and, if relevant, more closely reviewed the abstracts of the 5.613 publications. Between and within every step, they discussed inclusion and exclusion until a consensus was reached. Two-

Please cite this article in press as: A. Ebenau, et al., Life values of elderly people suffering from incurable cancer: A literature review, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.05.027

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hundred and sixty-four articles remained for full-text reading by the first author. In case of any doubts about inclusion, articles were also read by the co-authors and their inclusion was discussed until a consensus was reached (See Fig. 1, [36]).

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themes (life values). The research team formulated the remaining life values. Fourth, the first author added descriptions to the identified life values based on the information from the marked segments [38]. Between these steps, the co-authors peer-reviewed the first author's coding, categorization, and description.

2.3. Quality assessment 3. Results After inclusion, the authors assessed the publications on methodological robustness, according to the protocol by Hawker et al. [37]. Inclusion was agreed upon if the articles scored more than half of the possible points, which was set at a score of 20. Scores were divided into 'bad' (20), 'fair' (20 and 28) and 'good' (28). When the scores were less than or equal to 25, the author appointed scores were compared, and the publications were discussed. After quality assessment, one article was excluded, three articles were scored as 'fair' and the remaining twenty-seven were scored as 'good' (See Table 1). Finally, 30 articles were included in this review. 2.4. Data synthesis

Eligibility

Screening

Idenficaon

To organize the remaining data, several steps were undertaken. In the first step, primary sources were categorized based on the methodology used. Second, texts were read while marking relevant content related to life values (see the definition of life values in the introduction). All relevant information was organized in a preliminary table. Third, the marked fragments from the individual publications were coded for life values and, afterwards, were categorized by applying a constant comparison method. If suitable, in vivo codes were used for the formulation of the main

Records idenfied through database searching (n = 6.553)

In total, 5.613 publications (duplicates excluded) were selected for further analysis, one of which was provided by an external source (colleague). In total, 30 articles remained after the selection process. As seen in Table 1, more than half of the publications were published in 2010 or afterwards (n = 17). Most studies are from the United States. Quantitative research articles (n = 15) proved to be most suitable for describing broader trends within lives of elderly patients with incurable cancer. Specific life values in relation to living a life with advanced cancer, are mostly explained by qualitative (n = 11) and mixed method (n = 4) research articles. This distinction between broad trends and particular life values also functions as the outline for the themes mentioned below. Life values that were found within literature were the following: comfort, continuity, humility, dignity, honesty, optimism, hope and preparedness (See Table 2). 3.2. Comfort The literature often showed that a higher age was significantly related to both life-extending treatment and life support being less

Addional records idenfied through other sources (n = 1)

Records aer duplicates removed (n = 941)

Records screened on tle and abstract (n = 5.613)

Full-text arcles assessed for eligibility (n = 264)

Quality assessment (n = 31)

Included

3.1. Study characteristics

Records excluded (n = 5.349)

Full-text arcles excluded (n = 233)

Full-text arcles excluded (n = 1)

Studies included (n = 30)

Fig. 1. Search flow diagram: Preferred Reporting Items of Systematic reviews and Meta-Analysis (PRISMA).

Please cite this article in press as: A. Ebenau, et al., Life values of elderly people suffering from incurable cancer: A literature review, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.05.027

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Table 1 Characteristics of included studies. Articles

Year

Voogt et. al. [39]

2005 The Netherlands 2008 USA 2010 USA 2004 USA 2010 USA 2016 USA 2003 USA 2013 USA 2000 USA 2011 United Kingdom 2010 The Netherlands 2011 The Netherlands 2014 United Kingdom 2012 Canada 2002 Canada 2008 USA 2000 USA 2013 Norway 2014 USA 2013 United Kingdom 2014 Australia 2004 Canada 2011 Sweden

Rose et. al. [14] Wright et. al. [40] Rose et. al. [21] Parr et. al. [30] Lattie et. al. [41] Chen et. al. [42] Bischoff et. al. [43] Rose et. al. [44] Brown et. al. [45] van Laarhoven et. al. [46] van Laarhoven et. al. [47] Hall et. al. [17] Wentlandt, et. al. [48] Chochinov et. al. [16] Gardner [49] McCord Mackey and Sparling [50] Devik et. al. [51] Adorno and Brownell [52] Hanratty et. al. [53] Best, Butow and Olver [54] Duggleby and Wright [55] Friedrichsen, Lindholm and Milberg [56] Lowson et. al. [57] Adelbratt and Strang [33] Ryan [35] Waldrop, Meeker and Kutner [58] Fegg et. al. [59] Duggleby et. al. [60] Vig and Pearlman [61]

2013 2000 2005 2015 2005 2010 2003

Country

United Kingdom Sweden USA USA Germany Canada USA

n

Research method

Quality score

122

Quantitative

Good

323 301 1416 396 (deceased) 212 234 4399 (deceased) 2182 244

Quantitative Quantitative Quantitative Quantitative Quantitative Quantitative Quantitative Quantitative Quantitative

Fair Good Good Good Good Good Good Good Good

68

Quantitative

Good

151

Quantitative

Good

105 (45 patients with advanced cancer; 60 residents in care homes) Quantitative

Good

469 213 35 couples 3 5 12 32

Quantitative Quantitative Qualitative Qualitative Qualitative Qualitative Qualitative

Good Good Good Fair Good Good Good

15 10 45

Qualitative Qualitative Qualitative

Good Good Good

27 (14 patients with lung cancer and 13 heart failure)

Qualitative

Good

35 (20 patients and 15 next kin members) 5 80 (42 patients with cancer and 38 family caregivers) 64 (36 patients with advanced cancer; 28 patients with ALS) 3 triads (triad: older patient, significant other and primary nurse) 26 (13 patients with terminal heart disease and 13 patients with cancer)

Qualitative Qualitative Mixed method Mixed method Mixed method Mixed method

Good Good Good Fair Good Good

desired. Instead, elderly patients with incurable cancer compared to younger patients more often favored their quality of life over life prolongation. Pain relief, management and control appeared to be of great importance to being comfortable [21,30,39–42,62]. In another study (without a comparison with younger patients), a similar preference was found [43]. Patients aged 65 and older also actually received less aggressive treatments than younger patients and consented to this decision [44].

3.3. Continuity 3.3.1. Personal continuity Several qualitative publications showed that, in the face of death and insecurity about the future, elderly patients with advanced cancer were aiming to keep up their former lives. They struggled to redefine their identity and sometimes even experienced a loss of personhood. Feelings of unfamiliarity, grief, ‘being

Table 2 Summary of life values based on literature exploration. Life values1

Meaning (summary)

Comfort

Quality of life as the goal of treatment: for elderly patients with cancer, achieving comfort played a major role over life extending therapies. Pain control was important in being comfortable. Aiming at keeping up continuity in both the personal and social domain: the studied group desired that they could keep up their activities as they used to and remain the person they used to be. Home and independency played major roles in this goal. Also, the patients preferred a social continuation of the informal or medical support they received as well as a wish to keep up relations as they used to be. A behavior and attitude to avoid that proxies and HCPs were burdened: elderly patients with cancer often took upon a humble attitude, even more when it considered the well-being of proxies. The patients desired that HCPs treated them with respect and took them seriously. Age should not play a role in being sincerely cared for as a human being. An important object within professional care giving: the study group found it very important that HCPs were honest and truthful about their diagnosis and condition. By that, patients could adapt their perspectives and hopes. A behavior and state by which patients could cope with cancer and its unpredictability: both served as sources of strengths. Different types of hope were expressed, relating to social, medical or physical and existential issues. Both a feeling and behavior of being prepared for death: several actions were taken by patients to reach this goal, mostly to assure that proxies were left behind in a decent way. ‘Being prepared’ contributed to a ‘good death’.

Continuity

Humility Dignity Honesty Optimism and hope Preparedness

1 Control and independency appeared strongly intertwined with and part of several other values. They especially belonged to continuity and humility. For this reason we did not present them as separate values.

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in decline’ and a loss of control were triggered by bodily changes, the side-effects of medical treatments and the inability to keep up former activities. While the elderly patients with incurable cancer were not denying the fact of an inevitable death, the patients preferred to continue life as they had lived before the illness. The studies' participants explained that they still made plans for and dreamed about the future. Moreover, they were trying to revive their life before the illness by reorganizing past activities and thus adapting to their illness. Some interviewees described that staying involved in activities provided a sense of meaning and normalcy in their lives. It also gave rise to a feeling that they were still alive and not yet in a phase of actively dying [49–52,61]. Important within this value of personal continuity was a feeling of being home. This appeared to be constituted of a combination of things, namely, a place where the elderly patients with advanced cancer 1) are surrounded by their personal belongings and proxies; 2) are able to practice their daily routine and feel familiar and 3) can remain independent as long as possible, as a reminder and a precondition of who they are. Home, thus, can be seen as a medium as well as a metaphor of personal continuity, like a material realization of the patients’ personal and social history. An option to die or to be cared for at home appeared to be important [50,51,53], although, for others, a place where they are comfortable and do not have pain was considered more important [53]. Some articles described a transformation in the identity of elderly patients with incurable cancer when they moved to another environment. Hospice enrollment, for example, was followed by a cognitive shift from living with incurable cancer to dying from cancer, in which no return to health was expected [58]. A transition towards nursing care was considered negative by both people living alone as well as people living together with one or more proxies. The first group, however, was actually anxious for the care transitions. For them, not being able to take care of themselves and being removed from their home was a sign of the end of life [53]. 3.3.2. Social continuity The literature made two kinds of references to social continuity, namely, as elderly patients with incurable cancer appreciated the continuation of 1) practical and emotional support and 2) relationships (as they used to be). One mixed method study supported this trend by stating that a higher age significantly correlated with the importance attached to conservation. Conservation in this study was defined by 1) security: ”safety, harmony, and stability of society, relationships, and the self” 2) conformity: ”restraint of actions, inclinations, and impulses likely to upset or harm others and violate social expectations or norms” and; 3) tradition: ”respect, commitment, and acceptance of the customs and ideas that traditional culture or religion provide”. Especially the importance that elderly patients with advanced cancer attached to stability and conformity shows a preference for a continuity of relationships as they used to be [59]. Qualitative studies confirmed and concretized this finding. Elderly patients with incurable cancer often received practical and emotional support from either family, friends or a religious community [57,61] and as one article showed - they were very grateful for the actual continuity of this informal care. They could rely on their family and friends and referred to them as ”our rock” or ”being standby”. The elderly patients with incurable cancer experienced that they really could rely on their family and friends [57]. The same desire accounts for their social relationships with their health care professionals. Elderly patients with advanced cancer felt really comfortable when they had the same professional over time and when they knew that the professional would be there in the future. This would provide room to build a (personal) connection, and it would avoid them having to repeat their story [53].

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The literature made a second reference to social continuity. In the face of uncertainty, elderly patients with incurable cancer (and their spousal partners, as well) struggled to redefine their roles, communication, responsibilities and intimacy. Working together in renegotiating and rebalancing these aspects felt uncomfortable but it was needed to maintain their shared lives and their “psychological, emotional and spiritual equilibrium” [49]. The elderly patients with incurable cancer expressed an appreciation for the time they spent with their loved ones [61]. They also expressed grief and sometimes even (existential) anxiety about their future separations from them. These findings reinforce and confirm a wish for the conservation and continuity of a relationship between elderly patients with incurable cancer and their proxies [33,50]. 3.4. Humility 3.4.1. To loved ones A broadly shared experience by elderly patients with advanced cancer appeared to be the importance attached to the well-being of proxies and their feelings as well as the avoidance of being a burden. A mixed method study described that elderly patients with incurable cancer attached more value to the well-being of people close to them than to the values aimed at power, achievement and gratification of the self [59]. Qualitative studies confirmed these observations and stated that a dying process in which the loved ones are protected in their burden, contributed to a good death. Practically, this could mean arranging funerals and finances and completing unfinished business. Also, trying and being willing to maintain independency, living at home as long as possible and being afraid to ask for too much practical help from their proxies, indicated this tendency [51,53,61]. Respondents also tried to avoid causing an emotional burden to others, for example, by withholding the truth or their emotions [57]. Additionally, elderly patients with incurable cancer did not want their (grand)children to remember them in a deteriorated state [61]. 3.4.2. To health care professionals A fear of causing inconvenience to HCPs appeared to be a shared experience in elderly patients with incurable cancer. Quantitative studies showed that in comparison with younger patients – the elderly significantly more often favored a passive role (32,5% of the younger patients versus 63,8% of the older patients did so in one study) [45] and were less likely to seek advice and information [46,47]. The elderly patients with advanced cancer reported that they felt it was causing trouble to ask questions and, as a result, were complying with the role of being a ‘good patient.’ Trying to keep up their independence was sometimes a part of living up to this idea of being a 'good patient' [35,51,57]. 3.5. Dignity Two quantitative studies found that younger patients with incurable cancer suffered more from dignity distress than elderly patients with such cancer[16,17]. These studies were concerned with dignity in general. One qualitative study suggested otherwise, with dignity being studied within a medical context. The elderly patients with advanced cancer expressed feelings of inferiority from HCPs when communicating with them and were said to be met with refusal and exposed to so-called ageism. This phenomenon was explained as an attitude that approaches elderly people unequally, which results from an underlying thought that old(er) age is less worthy. Interestingly, elderly patients with incurable cancer did actively criticize these experiences and explicated a desire for respect when talking to the interviewers, but, in contact

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with the professionals, they took on a more humble attitude [51]. Values and behavior, thus, seem to be dynamic and a subject of prioritization, depending on the context. The interviewees from this same study also described mechanisms by which feelings of dignity could be stimulated or restored. People who received life-prolonging chemotherapy stated it stimulated trust in the doctor 'doing his or her best,' which was considered important, as the treatment was offered to them despite their old age. In such cases, they felt taken seriously [51]. Other studies showed that elderly patients with incurable cancer really appreciated being treated and sincerely cared for as real human beings: being listened to, being talked with, and their wishes and desires being taken into account. A genuine interest by professional caregivers was a way of recognizing the human being behind a patient. Personalized care by competent and knowledgeable HCPs who created an opportunity for patients to express themselves created a trusting environment [35,51,53,54,61]. 3.6. Honesty Within different studies, the elderly patients with incurable cancer expressed a desire for honesty and openness of information. Being honest and telling the truth about the diagnosis, condition and whether or not they were actively dying was appreciated by the elderly patients with advanced cancer. The information could be hope-fostering or hindering. Either way, it helped them to refocus and adapt their hope. Also, it cleared their minds about what to expect in the future [35,55,56,61]. One study showed that every participant was indeed aware of the absolute truth of an incurable disease, but people had their preferences for coping with and communicating about the disease with HCPs, which were: 1) facing the whole truth to take action; 2) partly facing the truth to keep up hope and 3) fluctuating between facing and avoiding the truth. These strategies, however, were not linked to age [56]. Elderly patients with incurable cancer thus appeared to be balancing between a need for honesty and a desire to keep up hope. 3.7. Optimism and hope Within the literature, several sources of coping with the unpredictability of one’s situation were explained, namely, spirituality, positivity and hope. Spirituality and religion were mentioned shortly in a few articles as sources of comfort, reassurance, strength and meaning [35,49,50,61]. Positivity and hope are more extensively described within the literature. Within the literature, optimism and hope were found as a behavior and a coping strategy. Optimism translated into positive behaviors by which the elderly patients with incurable cancer ‘kept up’ for both themselves and their social environment. In such cases, sometimes concerns and worries were barely spoken about [49]. Optimism and hope were referred to as an important source of strength and resilience and as an instrument for enduring the face of (potential) identity loss and inevitable death. Elderly patients with advanced cancer considered hope to be something that was always present, and they tried to keep it alive, even when it was sometimes hard to find. Different forms of hope were explained, which can be divided into three dimensions, namely, hope for 1) the preservation of undertaking activities with their partners and a better future life for their family (social desires); 2) the curing, improvement and control of pain and suffering (medical and physical issues) and 3) life extension, living life to the fullest in the time left, a peaceful death and life after death (a more existential dimension) [35,49–51,55,60]. One publication focused explicitly on the ways to foster, maintain and refocus on hope. The following hope-nourishing strategies were mentioned: 1) leaving a material or immaterial

legacy was said to be a way of giving meaning to life and, also, to provide something to live on after one is dead; 2) the achievement of short-term goals, which gave a sense of control; 3) symptom control; 4) turning off the mind, e.g., by humor; 5) supportive family and friends, faith, symbols for hope and 6) positive thoughts to refocus on hope. When losing these strategies, sometimes the elderly patients with incurable cancer felt that their hope was hindered, or they experienced a loss of control over individual life [55]. The elderly patients with advanced cancer were ambiguous in their preferences for chemotherapy [51]. On the one hand, it was considered very important as a way of fostering hope on improvement and delaying death. They appreciated it when the professionals supported them in their hope and also maintained hope themselves. On the other hand, the participants also described despair regarding chemotherapy’s physical side-effects and the stress that comes with chemotherapy. There appeared to be a tension between the hope to live longer and a desire to maintain a decent QOL (that is congruent with their life before the illness). Such QOL and hope are endangered when symptoms increase, for example, by palliative chemotherapy [51,58,61]. 3.8. Preparedness One quantitative publication described that the younger a person, the less well (s)he felt prepared for death. The median of the group that felt well prepared was 64 years old versus 57 years old for those who did not feel well prepared [48]. Feelings of ‘being’ or ‘getting ready’ for death were aimed for by elderly patients with incurable cancer in several ways. Plans upon death were made and prioritized to reduce the burden on loved ones. Organizing funerals and finances were ways of doing this [53,61]. Leaving a legacy both material and immaterial concerned both what was going to be left behind as well as how the loved ones would be left behind [49]. Other ways to assure a ‘good death’ were saying goodbye to their proxies and being on good terms with them, themselves and a transcendent reality [61]. One qualitative article described that elderly patients with advanced cancer appeared to ”plan for death, but not for dying”; they shared concerns and sometimes were anxious about their future pain progression, the manner and timing of death and how their death would both practically and emotionally affect their loved ones [50,53]. In view of a desire for comfort, it is interesting that one publication stated that elderly patients with incurable cancer did plan on their death, but did not plan for future deterioration. In other words, elderly patients with advanced cancer may not actively practice advance care planning. This nonpractice was explained by an uncertainty of how health would develop in time and a denial and a wish to wait for the moment that death is inevitable [53]. Another publication stated the arrangements for death; specifically, a living will was arranged to assure appropriate treatment at the very end of life. This article did not refer to deterioration [61]. As described within ‘humility,’ a sense of preparedness came with the protection of proxies and their burden by preparing for death. 4. Discussion and conclusion 4.1. Conclusion This review is an explicit recognition that the life values of elderly patients suffering from incurable cancer are worthy of exploration. Elderly patients with incurable cancer appeared to attach great value to comfort, continuity, humility, dignity, honesty, optimism, hope and preparedness. Life values serve both as a basis for the way that communication is shaped as well as the

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final goal or direction of this communication. To achieve care and communication that is tailored to the individual patient, HCPs should discuss with elderly patients with advanced cancer what made their lives worthwhile before the diagnosis and what will do so now and in the nearby future. It is to be expected that these discussions will have a positive impact on the patients’ emotional, physical, social and spiritual health. 4.1.1. Strengths and limitations of this study There are some weaknesses to our study. First, due to the thematic analysis that we used, a broad as well as an in-depth overview of the literature was provided to highlight the life values of elderly cancer patients suffering from incurable cancer. In doing so, we may have disregarded the diversity within the group of these patients, such as their differences in age, gender, marital status, and societal status. Additionally, since the qualitative articles (which served as the main base of the results) generally did not distinguish between subgroups, we could not do so either. Furthermore, as this review was explorative, these results do not directly translate to practice by means of practical tools or in providing prevalence estimates. Finally, since we excluded nonEnglish articles, we may have overlooked values from countries that do not share a European religious and/or cultural orientation. Similarly, the liberal character of some of the included countries, concerning legislation and the relative openness of talking about death and dying, might have biased the results of the included studies. There are, nevertheless, strengths to our study as well. This is the first broad review with a structured literature search that explicitly focuses on the life values of elderly people suffering from incurable cancer. As the life values appear to lie at the basis of decision-making and experiences within medical care, this review is of great importance to the medical practice. Its methodological quality assessment and the fact that most of the findings were broadly shared between articles validate this article’s findings. 4.2. Discussion This review synthesized the empirical literature on the life values of elderly patients with incurable cancer. We identified the following eight life values: comfort, continuity, humility, dignity, honesty, optimism, hope, and preparedness. The reviewed literature showed that continuity was a major theme within the lives of elderly patients with incurable cancer. It could also explain the preference for comfort over life extension in these patients, as the life prolonging interventions and their possible side-effects may be considered threats to a stable physical well-being, comfort, and a continuation of actions and identity. However, coping with incurable cancer seems ambiguous for these patients as well as their anxiety towards future progression and pain, and hope for control in the last phase of life still prevails [63,64]. The finding that elderly people with incurable cancer prefer to avoid both life extending therapies and planning upon deterioration appears to be a focus on short-term well-being and a preference for the continuation of life as it used to be. Old age could be an explanatory variable. First, the general idea within society is that dying at an old age is acceptable. The completion of life and the conclusion of worldly affairs (e.g., projects concerning professional or societal involvement) are more likely with old age [65]. Second, being able to accept and be comfortable with the end of life is highly regarded in older patients [66]. Third, receiving a diagnosis of a life-threatening disease is something that can be somewhat expected with old age [67]; thus, resignation with such a diagnosis seems to be more logical than fighting against it. Finally, a future situation in which a particular anti-life is portrayed, where the

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continuation of and commitment to values and ideals becomes too difficult, might be really uncomfortable to think about and, even more, to plan upon [53,68]. This review showed that, for elderly people with advanced cancer, hope and optimism are important values. The important role of hope can be found in other literature, as well [69,70]. One article, for example, showed that being realistic about the meager chance of a positive outcome of experimental therapy often appeared to be overruled by motivations that were based on faith and hope. People undergoing experimental therapy had the basic understanding that the main reason for a trial is to gain knowledge about the drug, but they kept up a distinction between the therapeutic benefit that they hoped to gain for themselves and the effects on other participants [71]. Thus, ambiguous feelings seem to be well-known to elderly patients with incurable cancer, who prefer realism and honesty and choose short-term comfort and continuity, while, on the other hand, they still hope for life extension and a cure. 4.2.1. Future research This study concerns the exploration of the life values of elderly people suffering from incurable cancer. Most findings of this study, such as hope, comfort, minimized burden, preparedness, dignity and continuity of the self, are comparable with other populations, such as younger patients who require palliative care, people suffering from other incurable diseases or elderly people in general [59,63,64,66,69,72–77]. One may thus wonder how unique the values found above are for elderly patients with incurable cancer. For example, one study showed that the value of conservation was correlated with a higher age [59]. Another publication stated that feelings of preparedness are less likely in a younger age [48]. It might be that younger patients are more open to change or they set different goals in life. In the future, empirical research has to be a focus on the occurrence of life values in the daily language of elderly patients with advanced cancer, the forming and formulation of life values with patients, the development and use of tools to clarify life values, and the evaluation and implementation of research on the way that life values and tools can be a successful part of patient-health care professional communication. 4.3. Practice implications Several practice implications can be deduced from this review, relating to the openness of communication. First, HCPs should be aware of the wishes of many elderly patients with incurable cancer to focus on their comfort of life instead of a life-prolonging treatment. Currently, elderly people are often subject to overtreatment. In such cases, QOL is at stake [78]. Second, HCPs have to explore the need of elderly patients with incurable cancer to keep up continuity against a background of often vulnerable social relationships. In striving for personal continuity, elderly patients could neglect their disease too much, thereby possibly burdening family care. Or, on the contrary, when social continuous support becomes too important, patients could focus too much on avoiding being a burden. Third, one may wonder about the extent to which elderly patients with advanced cancer would suit the current trend of considering patients as active agents and participants within care trajectories and decision-making (patient empowerment), as this review showed that elderly patients with incurable cancer regularly comply to HCPs. One study though, mentioned that these patients functioned as active agents by criticizing the HCPs' presumed ageism [51]. Literature is ambiguous about the experiences of shared decision-making in practice. One study showed that HCPs perceived and understood the preferences for decision-making in elderly patients differently than the patients

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themselves. Physicians assumed that these patients valued a less shared approach, but in fact they did not [29]. Another study, however, showed that elderly cancer patients actually did experience caring and collaborative communication styles with their doctors [79]. Fourth, we discuss the relationship between life values and symptom relief. A systematic review showed that 66,4% of patients with advanced, metastatic or terminal cancer suffered from pain, but that pain was often underreported [80]. Pain is a layered concept and refers to the life value of feeling comfortable. This example as well as the practice implications show the importance of medical care practice in which there is room for explicit discussions about life values. In daily practice, this could especially be important for elderly people with incurable cancer, considering their humble attitude. Person or patient centered communication that addresses the life values mentioned in the results, which is aimed to improve shared decision making, results in more tailored treatment and care and strengthens the patient's supporting systems. One study stated however, that a communication style in which HCPs focused on the patient as a person did not appear to be a common experience [79]. The incorporation of life values into communication thus might be a challenge. Hopefully, the life values identified in this article (see Table 2) can be a first step towards developing a practical guide for communication on life values. Competing interests Conflicts of interest: none. Acknowledgements This work was supported by the Dutch Cancer Society (grant number R0002276). We would like to thank Hans Timmerman, who offered critical and relevant observations on AE’s first draft of this manuscript, and Kees Besse (pain physician), who reviewed this paper from a clinical point of view. Appendix A. Search terms *

Basic Search

Advanced search

OR Terminally OR Terminal Care OR “Terminally Ill” OR “Palliative AND Care” OR “Advance Care Hospice OR Palliat* OR End of Planning” OR “Attitude to Life Death” OR “Death” OR “Cancer Care Facilities” OR “Hospices” OR “Hospice and Palliative Care Nursing” OR “Hospice Care” OR “Terminal Care” OR “Hospice Care” OR “Terminal Care” OR Geriatr* OR Geriatric* OR Frail* 2. “Geriatrics” OR “Geriatric OR Old age OR Elderly AND nursing” OR “Aged” 3. “Neoplasms” OR Neoplasm* OR Tumor* OR AND Cancer* 4. OR Personal Autonomy OR “Patient Preference” OR “Morals” OR “Virtues” OR Personhood OR Dignity OR “Social Values” OR “Qualities of Virtue OR Moral* OR Quality of Life” OR “Value of Life” Life OR Value of life OR Social Value 1.

* Whether searches were done based on title, abstract, keyword, MeSH subject or topic depended on the database.

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Please cite this article in press as: A. Ebenau, et al., Life values of elderly people suffering from incurable cancer: A literature review, Patient Educ Couns (2017), http://dx.doi.org/10.1016/j.pec.2017.05.027