End-of-Life Care, Dying and Death
Illness Experience and Health Care
’The art of living well and dying well are one.
Death is one of the attributes you were created with; death is part of you. Your life’s continual task is to build your death.
Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.’
Brittany Maynard (psychologist and right-to-die activist, 2014)
In this final chapter, we review recent research on the psychological aspects of end-of-life care, dying and death. We consider the concepts of a ’good death’ and the ’quality of death and dying’ and examine how these constructs can be quantified. We review the growing literature on palliative and end-of-life care, which is insufficiently available and varies in quality. We review recent trends towards legalisation of physician-assisted care and physician-assisted suicide and the use of suffering as a criterion. Finally, we discuss brain death and organ donation.
Dying and Death
Unless a person dies of sudden cardiac arrest in their sleep, the end of life can be a time of uncertainty, suffering and caregiver travail. In the UK, unexplained sudden death is frequently recorded as due to death from ’natural causes’. Many such deaths are due to sudden cardiac arrest, the largest cause of natural death. Old age is not a scientifically recognized cause of death. A more direct cause is sought, although it may not be established in certain cases. Deaths caused by active intervention or ’unnatural’ causes are usually from accidents, misadventure (accident following a wilful and dangerous risk), suicide or homicide. A person’s death is recorded on his/her death certificate, which is completed by a doctor. In the vast majority of cases, the cause of a person’s death is known and can be recorded with adequate certainty.
Improvements in living and working conditions, and in health care, have led to improved survivorship of potentially fatal conditions and increased life expectancy. The ’greying’ of society means that many more people are living with varying degrees of illness, suffering and disablement for long periods of time. Families are experiencing increasingly long periods of caring and can face a daunting array of decisions serving as a proxy for their dying loved ones. As a consequence, palliative care and end-of-life (EOL) care, the hospice movement, and even requests for physician-assisted death (PAD) or physician-assisted suicide (PAS) are becoming integral parts of the health care industry. These trends also have led to a significant line of research on the quality of dying and death (QoDD). This chapter reviews the current state of the art of dying ’a good death’.
Outside religious dogma and poetry, there has been little in the way of advice. An influential theory by Elisabeth Kübler-Ross (1997) received much publicity but unfortunately has little empirical support. Based on the ideas of Bowlby (1961) and Parkes (1965), Kübler-Ross constructed a five-stage theory of death and dying, of which death is ’the final stage of growth’. She defined five stages experienced when terminally ill patients face their own deaths: denial—dissociation—isolation, anger, bargaining, depression and acceptance. Psychological and medical thinking about death and dying drew inspiration from Kübler-Ross’s (1969) work. Although widely cited, Kübler-Ross’s five-stage model is gradually fading as an approach to the care of the dying.
Numerous studies have highlighted the poor quality of EOL care, with many hospitalized patients dying in pain and distress while receiving life-sustaining treatments that they did not actually ask for, and with grieving families carrying great emotional stress and, especially in the USA, financial burdens. There are basic preferences and needs that should be met if individual QoDD is to be maximized. Yet basic needs for a high QoDD are unlikely to be met in any modern technology-based, efficiency-driven hospital. As far as possible, decisions about health and social care must always remain with the individual person. However, to an increasing extent the control over an individual’s care inevitably passes to medical and nursing staff and to the patient’s family. This prospect is especially likely when the person’s cognitive abilities suffer deterioration because of illnesses such as stroke, heart failure, dementia or neurological conditions.
Troubling ethical issues are raised on an everyday basis, and family and relatives are thrown into sensitive, emotionally charged, life-changing scenarios for which they may be ill-prepared. Important practical decisions that have to be made on behalf of an incapacitated patient include:
· diet, hydration, and personal hygiene;
· treatment, including pain relief;
· visits by family members;
· transfer to a care or nursing home;
· transfer to a hospital;
· transfer to a hospice;
· do-not-resuscitate (DNR) decisions;
· physician-aided dying.
The complexity of the EOL scenario can often overwhelm an already upset friend or family member and can greatly influence the dying person’s QoL and QoDD. Understandably, for the young and able-bodied reader these aspects of health care may seem remote and abstract. Exactly where, when and how we die is unknown. That one will definitely die is the only certain prediction one can make. It is well to reflect on Montaigne’s statement: Your life’s continual task is to build your death.
Building a ’Good Death’
A good death is what any thinking person wishes for — a good, long, fulfilling life followed by a good death. But what exactly would a good death be like? To answer this question, we must try to define what is meant by the quality of death and dying (QoDD). Specifying the QoDD has been attempted by several investigators and research groups. Defining the QoDD is curiously complex — for the obvious reason that the real experts die before they can give the scientist their opinions! Those self-proclaimed mediums — every one of them a quack — who purport to communicate with the ’spirit world’ have failed to deliver one scintilla of data that is useful to science. Nevertheless, ways and means to decipher the nature of a good death are available (Curtis et al., 2002) and listening to ’spirit’ mediums is not one of them. The views of loved ones, family members, nurses and other health care professionals can all go into the ’mix’ to generate working hypotheses.
A few psychometric questionnaires are available for the evaluation of the quality of death and dying. A systematic review by Kupeli et al. (2016) included measures for assessing quality of death and dying and/or quality of care and satisfaction with care at the very end of life. The measures Quality of Death and Dying (Patrick et al., 2001; Curtis et al., 2002, Box 25.1) and FAMCARE (Kristjanson, 1986) have both been validated in a variety of cultural settings and participant groups.
In light of the above items, a good death is much more than freedom from pain, although that can be a positive feature, and death should not necessarily be sudden. People may wish to achieve many different tasks during the process of dying. Three themes that emerged in a debate about ageing and dying were control, autonomy and independence (Debate of the Age Health and Care Study Group, 1999). The authors of the debate report identified 12 principles of a good death (see Box 25.2).
Box 25.1 Items for Measuring the Quality of Dying and Death (QoDD)
Each item is asked with the following leader: ’How would you rate this aspect of (patient’s name) dying experience?’ The response scale is from 0 to 10 where 0 is a ’terrible experience’ and 10 an ’almost perfect experience’.
· 9. Having pain under control.
· 10. Having control of event.
· 11. Being able to feed oneself.
· 12. Having control of bladder, bowels.
· 13. Being able to breathe comfortably.
· 14. Having energy to do things one wants to do.
· 15. Spend time with your children as much as you want. (or I have no children)
· 16. Spend time with your friends and other family as much as you want.
· 17. Spend time alone.
· 18. Be touched and hugged by loved ones.
· 19. Say goodbye to your loved ones.
· 20. Have the means to end your life if you need to.
· 21. Discuss your wishes for end-of-life care with your doctor and others.
· 22. Feel at peace with dying.
· 23. Avoid worry about strain on your loved ones.
· 24. Be unafraid of dying.
· 25. Find meaning and purpose in your life.
· 26. Die with dignity and respect.
· 27. Laugh and smile.
· 28. Avoid being on dialysis or mechanical ventilation.
· 29. Location of death (home, hospice, hospital).
· 30. Die with/without loved ones present.
· 31. State at moment of death (awake, asleep).
· 32. Have a visit from a religious or spiritual advisor.
· 33. Have a spiritual service or ceremony.
· 34. Have health care costs provided.
· 35. Have funeral arrangements in order.
· 36. Spend time with spouse, partner. (or I have no spouse, partner)
· 37. Spend time with pets. (or I have no pets)
· 38. Clear up bad feelings. (or there were no bad feelings to clear up)
· 39. Attend important events. (or there were no important events to attend)
Source: Curtis et al. (2002). Reproduced with permission
Box 25.2 Twelve Principles of a Good Death
· To know when death is coming, and to understand what can be expected
· To be able to retain control of what happens
· To be afforded dignity and privacy
· To have control over pain relief and other symptom control
· To have choice and control over where death occurs (at home or elsewhere)
· To have access to information and expertise of whatever kind is necessary
· To have access to any spiritual or emotional support required
· To have access to hospice care in any location, not only in hospital
· To have control over who is present and who shares the end
· To be able to issue advance directives which ensure wishes are respected
· To have time to say goodbye, and control over other aspects of timing
· To be able to leave when it is time to go, and not to have life prolonged pointlessly
Source: Debate of the Age Health and Care Study Group (1999). Reproduced by permission
To have choice and control over where death occurs is one of the key principles. Understandably, most patients wish to die at home. Family members and friends are vital to the support of patients at home. A survey of 57 health care providers found that the most common attributes associated with a ’good death’ were being pain free, having family present, and sudden or peaceful death. Severe pain or discomfort were the most commonly reported attributes of a ’bad death’ (Najafi et al., 2014).
Ramirez et al. (1998) reported that approximately one-third of cancer patients in the UK received care from one close relative only, while about half were cared for by two or three relatives, typically a spouse and an adult child. Approximately two-thirds of cancer patients and a third of non-cancer patients typically received some kind of formal home nursing. However, many people who are supporting dying people have unmet needs. Anxiety, depression and feelings of isolation are common, particularly after the patient’s death. They may wish to say ’goodbye’, but the dying person also will not want to be a burden on family and friends and wish for a quick passing. They will be aware of the fact that the death of a loved one may be a ’blessed relief’.
Thirty years ago, Wallston et al. (1988) compared the quality of death (QoD) for hospice and non-hospice patients and found that the QoD scores were higher for terminally ill patients in hospices, either at home or hospital-based, than for similar patients who received conventional care. Fourteen years later, Miller et al. (2002) compared analgesic management of daily pain for two cohorts of dying nursing home residents enrolled or not enrolled in a hospice. A retrospective, comparative cohort design was utilized. Over 800 nursing homes in Kansas, Maine, Mississippi, New York and South Dakota contributed a subset of residents who were suffering daily pain near the end of life, 709 hospice and 1,326 non-hospice residents. Detailed drug use data before death were used to examine analgesic management of daily pain. The data showed that 15% of hospice residents and 23% of non-hospice residents in daily pain received no analgesics, and 51% of hospice residents and 33% of non-hospice residents received regular treatment for daily pain. Controlling for clinical confounders, hospice residents were twice as likely as non-hospice residents to receive regular treatment for daily pain (adjusted odds ratio 2.08). These findings suggest that analgesic management of daily pain was better for nursing home residents enrolled in hospice than for those not enrolled in hospice. Worryingly, many dying nursing home residents in daily pain were receiving no analgesic treatment or were receiving analgesic treatment inconsistent with pain management guidelines.
Statistics on pain management of dying persons in UK nursing homes are disturbing. In 2000, 66.5% of all deaths occurred in a hospital, 4.3% in a hospice, 7.8% in other communal establishments, 19% at home and 2.4% in other private houses (Office for National Statistics, 2002).
The hospice movement is growing in momentum internationally and the numbers of people who spend their last months of life in nursing homes and hospices are increasing rapidly (Najafi et al., 2014). The percentage of older people in the USA who received hospice care in the last 30 days of life increased from 19% in 1999 to 43% in 2009. The percentage who died at home increased from 15% in 1999 to 24% in 2009. In the next section, we review research on the merits of EOL care.
It has been apparent for many decades that EOL care is not best left to care homes and hospitals. These environments are not compatible with high-quality EOL care, which requires quiet, unpressurized, sensitive care that is tailored to each individual and his/her family. The vast majority of people want to die at home, but circumstances beyond their control often make this impossible. Cultural and language differences are also important considerations in EOL care.
Gysels et al. (2012) explored cultural issues that shape EOL care in seven European countries. They reviewed 868 papers using the following themes: setting, caregivers, communication, medical EOL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. They inferred evidence of clearly distinguishable national cultures of EOL care, with differences in meaning, priorities and expertise in each country. The diverse ways in which EOL care is practised should inform future improvements of EOL care.
High-quality EOL care should ideally reflect each individual patient’s values and wishes, promote compassionate communication and provide family-oriented care. It should lead to a reduction of non-beneficial, unnecessary and aggressive physical care and avoid prolongation of dying, prevent patient suffering and allow less wastage of precious intensive care unit (ICU) resources.
A ’Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments’ (SUPPORT) investigated how to improve EOL care and reduce the frequency of a ’mechanically supported, painful, and prolonged process of dying’ (Conners et al., 1995: 1591). In this highly cited, large-scale study in five US teaching hospitals, Conners et al. made a two-year prospective observational study (phase I) with 4,301 patients followed by a two-year controlled clinical trial (phase II) with 4,804 patients and their physicians randomized to the intervention group (n = 2,652) or control group (n = 2,152). The patients were hospitalized with one or more of nine life-threatening diagnoses, having a six-month mortality rate of 47%.
A specially trained nurse had multiple contacts with the patient, family, physician and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient—physician communication. Physicians in the intervention group received estimates of the likelihood of six-month survival for every day up to six months, outcomes of cardiopulmonary resuscitation (CPR) and functional disability at two months. Phase I observations found many concerning issues in communication, the frequency of aggressive treatment and the characteristics of hospital deaths. Less than half (47%) of physicians knew when their patients preferred to avoid CPR; 46% of do-not-resuscitate (DNR) orders were written within two days of death; 38% of patients who died spent at least ten days in an intensive care unit (ICU); and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time.
During the phase II intervention, patients experienced no improvement in patient—physician communication (e.g., 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes. Thus, SUPPORT suggested that enhanced opportunities for more patient—physician communication may be inadequate to change established practices. The study authors concluded: ’To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed’ (Conners et al., 1995: 1591).
Two decades later, is there any solid evidence that the low QoDD observed in 1990s hospitalized patients is changing? Or that hospital physicians are more ’teachable’ about practices conducive to raising QoDD? Sadly, the evidence suggests they may not be. Curtis et al. (2011) evaluated an intervention to ICU EOL care in 12 US community hospitals in Washington. The intervention was based on self-efficacy theory: changes in clinician performance were facilitated by increasing knowledge, enhancing attitudes and modelling appropriate behaviours. Unfortunately, the primary outcome, family-QoDD, showed no change with the intervention. Also, no change occurred in family satisfaction or nurse-QoDD.
A French study has shown a positive effect on QoDD by improving communication. Providing relatives of patients who are dying with a proactive EOL conference and a brochure may lessen the burden of bereavement (Lautrette et al., 2007). Lautrette et al. randomly assigned family members of 126 patients dying in 22 ICUs in France to the intervention format or to the customary EOL conference. Symptoms of anxiety and depression were less common in the intervention group compared to a control group.
Care of the dying and support for family members losing a loved one is a role requiring specialist knowledge, experience and training. EOL care appears to be another ’weak link’ in medical training, along with communication skills and psychosocial issues more generally. Specialist palliative care has two main client groups: the majority with a diagnosis of cancer and a minority with other critical illnesses. In order to provide better patient care, it is helpful to go back to first principles and work with direct knowledge of people’s beliefs about what makes a ’good death’. Steinhauser et al. (2000) researched descriptions of what makes a good death from patients, families and providers, using focus group discussions and interviews. The participants identified six components of a good death:
· pain and symptom management;
· clear decision-making;
· preparation for death;
· contributing to others;
· affirmation of the whole person.
Unsurprisingly, Steinhauser et al. found that physicians held a more biomedical perspective than other people, while patients and families felt that psychosocial and spiritual issues are as important as physiological concerns.
Bingley et al. (2006) reviewed narratives by people facing death from cancer and other diseases. The search identified 148 narratives since 1950 from which a sub-sample of 63 narratives could be reviewed. Bingley et al. found that the therapeutic benefits of writing were generally viewed as: a way of making sense of dying, together with a strong sense of purpose in sharing the story. Common themes were: changes in body image, an awareness of social needs when dying, communication with medical staff, symptom control, realities of suffering and spiritual aspects of dying. Writing about cancer in comparison to other illnesses showed differences in content and style. The authors suggested that: ’The narrative acts as companion and witness to the encroaching disability and debility, as well as charting the changes in relationships with loved ones, oneself and one’s body image’ (Bingley et al., 2006: 194).
Harding and Higginson (2003) reviewed interventions to support caregivers in cancer and palliative care. They made the usual criticisms of psychosocial intervention research: poor designs and methodology, a lack of outcome evaluation, small sample sizes and a reliance on intervention descriptions and formative evaluations in the literature. They suggested that alternatives to ’pure’ RCTs would need to be considered in carrying out evaluation research in this domain. As was the case in reviewing interventions for obesity, drinking and smoking (Chapters 10—12), it is apparent that larger-scale studies of higher quality are needed to reach definitive conclusions about the effectiveness of psychosocial interventions. This statement has become a desperate refrain in our textbook of health psychology.
Lorenz et al. (2008) published a systematic review with clinical guidelines on evidence for improving EOL care. To assess interventions to improve palliative care, Lorenz et al. selected systematic reviews that addressed ’end of life’, including terminal illness (e.g., advanced cancer) and chronic, eventually fatal illness with ambiguous prognosis (e.g., advanced dementia), as well as intervention studies that addressed pain, dyspnoea, depression, advance care planning, continuity and caregiving. Lorenz et al. (2008) screened 24,423 titles to identify 33 high-quality systematic reviews and 89 relevant intervention studies. Strong evidence existed for treating cancer pain with opioids, non-steroidals, radionuclides and radiotherapy; dyspnoea (shortness of breath) from chronic lung disease with short-term opioids; cancer-associated depression with psychotherapy, tricyclics and selective serotonin reuptake inhibitors; and multi-component interventions to improve continuity in heart failure.
Spiritual aspects are often missing in studies of EOL care. Williams (2006) summarized the qualitative literature on spirituality at the end of life. The majority of participants in 11 relevant studies had a diagnosis of cancer, but those with AIDS, cardiovascular disease and amyotrophic lateral sclerosis were also represented. The studies suggested three main themes within spiritual perspectives at the end of life:
· spiritual despair — alienation, loss of self, dissonance;
· spiritual work — forgiveness, self-exploration, search for balance;
· spiritual well-being — connection, self-actualization, consonance.
Qualitative studies have explored the quality of care from a patient perspective. Singer et al. (1999) used in-depth, open-ended, face-to-face interviews and content analysis in Toronto, Ontario, with 48 dialysis patients, 40 people with HIV infection and 38 residents of a long-term care facility. They identified five domains of quality EOL care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones.
One of the main determinants of family’s satisfaction with EOL care is where the death happens — at home or in hospital. Little data exist addressing satisfaction with EOL care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys. It is imperative that we closely examine patient and institution factors associated with quality EOL care and determine high-priority target areas for quality improvement.
Sadler et al. (2014) mailed a Bereavement Questionnaire to the next-of-kin of recently deceased inpatients to study factors associated with satisfaction with EOL care in Canada. The primary outcome measure was the global rating of satisfaction. Overall, 67.4% of respondents were very or completely satisfied with the overall quality of care their relative received. A common death location was the intensive care unit (45.7%); however, this was not the preferred location of death for 47.6% of such patients. In total, 71.4% of respondents who thought their relative did not die in their preferred location favoured an out-of-hospital location of death. Respondents who believed their relative died in their preferred location were 1.7 times more likely to be satisfied with the EOL care that was provided (p = 0.001). Nearly three-quarters of recently deceased inpatients would have preferred an out-of-hospital death. The authors concluded that improved communication regarding EOL care preferences should be a high-priority quality improvement target.
Palliative care focuses on relief of suffering and psychosocial support in patients who are suffering pain and/or distress and, in a dying patient, can help bring closure near the end of life. Palliative care should be available to anyone with serious illness experiencing pain, other distressing symptoms or emotional or psychological distress, at any stage of illness, including in conjunction with ’disease-modifying’ treatments (Dixon et al., 2015). In the UK, palliative care is delivered by specialist professionals with accredited training, usually working as part of multidisciplinary teams, and by generalists such as GPs, district nurses, hospital doctors, ward nurses, allied health professionals, staff in care homes, social care staff, social workers, chaplains and others.
According to a recent report (Dixon et al., 2015), a significant minority of people in the UK — at least a fifth of everyone who dies — are not receiving the palliative care they need. Dixon et al. estimated that 112,000 people in the UK are not receiving the palliative care that they need. Dixon et al. (2015) also reported that a quarter of people receive EOL care that their families consider to be of a poor standard.
Some groups are less likely to receive the care they need than others. For example, people with conditions other than cancer receive only 20% of referrals to specialist palliative care, much less than the 70% of people who die from non-cancer conditions each year. People aged 85 or over also receive little specialist palliative care, accounting for 39% of deaths but just 16% of specialist referrals. People from minority groups are as likely as people of white ethnicity to die at home. However, they report receiving poorer quality of care, rate care from care homes particularly poorly, and are more likely to die in hospital than in a care home. People living in more deprived areas have less access to community-based services, are less satisfied with the care they receive, are less likely to feel treated with dignity by all of the professionals involved in their care and also more frequently die in hospital.
Dixon et al. also reported that people without a spouse or partner are less likely to receive home-based services, to die at home, have their pain well controlled or receive care that their families consider to be high quality. It is likely that spouses or partners can help to ensure high-quality care by informally coordinating the care of different professionals, by acting as advocates and by providing care directly (e.g., administering medications).
Investment is needed to extend palliative care provision to everyone who would benefit from it, especially to meet the growing demand for palliative care from an ageing population. Dixon et al. suggest that good-quality palliative care may even provide annual net savings, with studies suggesting that these might amount to more that £37 million in the UK. Similar trends are evident in palliative care in the USA.
Experienced physicians and nurses often find discussions about palliative care with seriously ill patients and their families a major challenge. Lo et al. (1999) used two hypothetical scenarios to illustrate how physicians can initiate these discussions and to illustrate several communication techniques. Physicians can elicit a patient’s concerns using open-ended questions with follow-up on the patient’s response before discussing specific decisions. Patients’ emotions can be explored and patients encouraged to say more about difficult topics. Physicians can also raise unaddressed spiritual and existential concerns, should these be an issue for a patient. In addition to addressing physical suffering, Lo et al. suggest that physicians can extend their caring by acknowledging and exploring psychosocial, existential or spiritual suffering. As patients search for closure in their lives, active listening and empathy can have significant therapeutic value.
Bruera et al. (1991) described a method for assessing symptoms twice a day in patients admitted to a palliative care unit. Eight visual analogue scales were completed by the patient alone, by the patient with a nurse’s assistance, or by the nurses or relatives to indicate levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite and sensation of well-being. The scale provides a simple and useful method for the regular assessment of symptom distress in the palliative care setting.
Temel et al. (2010) conducted an RCT of early palliative care in addition to standard oncology care for patients with newly diagnosed metastatic non-small-cell lung cancer. Compared with the standard care group, the intervention group had better quality of life, lower rates of depression, and a 2.7-month survival benefit. The results suggest that palliative care is appropriate and potentially beneficial when introduced at the time of diagnosis of a serious or life-limiting illness, at the same time as all other appropriate and beneficial medical therapies are initiated, rather than as a final base type of care when other options have failed. The problem with this idea is the lack of resources in palliative care compared to other types of care that are perceived as ’front-line’ services, such as ICUs.
Impact of Death on Care Staff
Stress, anxiety and depression among senior health service staff can run at high levels (Caplan, 1994). A systematic review by Imo (2016) examined the prevalence and associated factors of burnout and stress-related psychiatric disorders among UK doctors. Prevalence of psychiatric morbidity ranged from 17% to 52%, burnout scores ranged from 31% to 54.3%, depersonalization from 17.4% to 44.5% and low personal accomplishment from 6% to 39.6%. General practitioners and consultants had the highest scores. The prevalence of burnout and psychiatric morbidity was found to be associated with low job satisfaction, overload, increased hours worked and neuroticism.
How do hospital doctors learn to cope with dying and death? Granek et al. (2016) interviewed 22 oncologists from three adult oncology centres. Oncologists were at different stages of their careers and varied in their sub-specialties, gender, and personal and professional backgrounds. The analysis revealed different ways of coping with patient death:
· cognitive — accepting and normalizing death and focusing on the positive, and on successes in the practice of oncology;
· behavioural — sports, hobbies, entertainment, and taking vacations;
· relational — accessing social support from family, friends and colleagues;
· professional — focusing on work, withdrawing from patients at end of life, and compartmentalization;
· spiritual coping strategies — turning to faith and religious coping.
The oncologists also reported challenges and barriers in coping effectively with patient deaths, including challenges in accessing social support, challenges that were related to gender and expression of emotion, and challenges in maintaining emotional boundaries when patients died. Granek et al. (2016) concluded that oncologists use diverse coping strategies in dealing with patient death, but obstacles to accessing this support were reported. They recommended that targeted interventions were needed for managing and coping with grief related to patient death in their emotionally difficult work.
The same research group (Granek et al., 2017) found that high burnout scores are associated with negative attitudes towards expressing emotion in coping with patient death. Higher burnout scores were associated with higher negative attitudes towards perceived expressed emotion (r = .25) among those who viewed affect as a sign of weakness and unprofessionalism. Interventions that enable oncologists to express emotion about patient death are recommended.
A particularly demanding task is notification of the patient’s family that their loved one has died. The death notification process can affect family grief and bereavement and also the well-being of physicians who carry it out. There is no standardized process for making death notification phone calls. In many cases this task is given to the most junior doctors, and residents are unlikely to be prepared before and to be troubled afterwards. Ombres et al. (2017) investigated death notification practices to develop an evidence-based template for standardizing this process. They developed a survey regarding resident training and experience in death notification by phone and invited all internal medicine residents at their institution to complete the survey. Of responders, 87% reported involvement in a death that required notification by phone. In all, 80% of residents felt inadequately trained for this task, with over 25% reporting that calls went poorly. Primary care physicians, nurses and chaplains were not involved. Respondents never delayed notification of death until the family arrived at the hospital. There was no consistent approach to rehearsing or making the call, advising families about safe travel to the hospital, greeting families upon arrival, or following up with expressions of condolence. The authors concluded that poor communication skills during death notification may contribute to complicated grief for surviving relatives and stress among physicians. It is clear that more training is needed. Ombres et al. suggested that this training could be combined with training in disclosure of medical error.
Death with Dignity: Physician-Assisted Death
In 1973 in the Netherlands, in the Postma case, a physician helped her mother to end her life upon her explicit, repeated request. The court judged that the physician had committed murder, but gave her only a suspended sentence while acknowledging that it is not in all circumstances the physician’s duty to prolong their patient’s life. Increasing interest in physician-assisted death (PAD) has occurred since its legalization in 1997 by Oregon’s Death with Dignity Act. Four other states, Washington, Montana, Vermont and California, have passed similar laws. PAD may also sometimes be labelled ’physician-assisted suicide’ (PAS). The Netherlands, Belgium, Luxembourg, Colombia and Canada (Quebec since 2014, nationally as of June 2016) also permit euthanasia. Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer (Emanuel et al., 2016).
Since 1988 in Zurich, Switzerland, an organization called ’Dignitas’ has helped people with terminal illnesses and severe physical and mental conditions to die assisted by qualified doctors and nurses. Dignitas has helped over 1,000 people die in suicide clinics in Zurich. Additionally, Dignitas provides assisted suicide for people who are deemed to be of sound judgement and submit to an in-depth medical report prepared by a psychiatrist that establishes the patient’s condition. In Oregon, until 2012, 1,050 people have received prescriptions for lethal medication and 673 have died after making the choice to take the drugs (Oregon Public Health Division, 2014).
Emanuel et al. (2016) reviewed the legal status of euthanasia and physician-assisted suicide and the available data on attitudes and practices for the period 1947—2016. Public support for euthanasia and PAS in the USA has plateaued since the 1990s (with a range of 47% to 69%). In Western Europe, an increasing and strong public support for euthanasia and PAS has been reported, but in Central and Eastern Europe support is decreasing. In the USA, less than 20% of physicians report receiving requests for euthanasia or PAS, and 5% or less have complied. In Oregon and Washington, less than 1% of physicians write prescriptions for PAS per year. In the Netherlands and Belgium, half or more of physicians reported ever having received a request, with 60% of Dutch physicians having ever granted such requests. Between 0.3% and 4.6% of all deaths are reported as euthanasia or PAS in jurisdictions where they are legal, with the frequency increasing after legalization. More than 70% involve patients with cancer. Typical patients are older, white and well-educated. Pain is mostly not reported as the primary motivation. A large proportion of PAS patients in Oregon and Washington reported being enrolled in hospice or palliative care, as did patients in Belgium. In no jurisdiction was there any evidence that vulnerable patients have been receiving euthanasia or PAS at rates higher than those in the general population.
Active euthanasia is currently not legal in many countries such as the UK, France, Spain, Italy and Germany. These European countries killed millions of innocent people in two world wars, and in Spain’s case a civil war, using bombs, guns and, in Germany’s case, the gas chamber, but they steadfastly refuse to allow the medically supervised euthanasia of individuals due to their extreme suffering. Euthanasia is considered manslaughter or murder. The Suicide Act 1961 makes it an offence to encourage or assist a suicide or a suicide attempt in England and Wales. Anyone doing so could face up to 14 years in prison. It is only legal in Belgium, Holland and Luxembourg. Under the laws in these countries, a person’s life can be deliberately ended by their doctor or other health care professional. The person is usually given an overdose of muscle relaxants or sedatives. This causes a coma and then death. Euthanasia is only legal if the following three criteria are met:
1. The person has made an active and voluntary request to end their life.
2. They are considered to have sufficient mental capacity to make an informed decision regarding their care.
3. It is agreed that the person is suffering unbearably and there is no prospect for an improvement in their condition.
’Suffering’ is a central concept in the right-to-die movement. A Canadian study by Karsoho et al. (2016) asked how proponents of PAD articulate suffering at the end of life within the decriminalization/legalization debate. They drew upon empirical data from their study of Carter vs. Canada, the landmark court case that decriminalized PAD in Canada in 2015, and analysed the different ways proponents constructed relationships between suffering, mainstream curative medicine, palliative care and assisted dying. Karsoho et al. suggest that proponents view curative medicine as ’complicit in the production of suffering at the end of life … [and] … lament a cultural context wherein life-prolongation is the moral imperative of physicians who are paternalistic and death-denying’ (Karsoho et al., 2016: 188). Proponents question whether palliative care has the ability to alleviate suffering at the end of life and claim that, in some instances, palliative care produces suffering. However, in spite of such misgivings, the authors reported that proponents insist on the involvement of physicians in assisted dying. They suggest that ’a request for PAD can set in motion an interactive therapeutic process that alleviates suffering at the end of life’. Furthermore, they argue that the ’proponents’ articulation of suffering with the role of medicine at the end of life should be understood as a discourse through which one configuration of end-of-life care comes to be accepted and another rejected, a discourse that ultimately does not challenge, but makes productive use of the larger framework of the medicalization of dying’ (Karsoho et al., 2016: 188).
The wave of new state laws on PAD is leaving physicians feeling under-prepared and unsupported in how to provide the best possible care to dying patients seeking assistance to die. Some professional organizations, such as the American College of Physicians, American Medical Association and American Osteopathic Association, are refusing to provide clinical guidance on the care of patients actively seeking PAD/PAS (Frye and Youngner, 2016). Other organizations, such as the California Medical Association and the American Academy of Hospice and Palliative Medicine, have dropped their traditional opposition and are taking a ’stance of studied neutrality’, a hands-off position chosen to recognize the diversity of views and foster discussion. Frye and Youngner (2016) argue that professional organizations should engage neutrally and take responsibility to minimize or avoid potential harms of PAS.
To determine whether there is a difference in the quality of the dying experience, from the perspective of family members, Smith et al. (2011) surveyed 52 Oregonians who received lethal prescriptions, 34 who requested but did not receive lethal prescriptions, and 63 who did not pursue PAD. Family members retrospectively rated the dying experience of their loved one with the 33-item QoDD (Curtis et al., 2002). Differences were reported in nine of the 33 items, but few significant differences were noted in items that measured domains of connectedness, transcendence and overall quality of death. Those who had received PAD prescriptions had higher quality ratings on items measuring symptom control (e.g., control over surroundings and control of bowels/bladder) and better preparedness for death scores (saying goodbye to loved ones and possession of a means to end life if desired) than those who did not pursue PAD or, in some cases, those who requested but did not receive a lethal prescription. The authors concluded that the quality of death experienced by those who received lethal prescriptions is no worse than those not pursuing PAD, and in some areas it is rated by family members as better.
The Royal College of General Practitioners (RCGP) in the UK rejected the newly proposed Assisted Dying Bill. Consultation with RCGP members (n = 1,700) showed that 77% were in favour of supporting the group’s opposition to changing the law (Baker, 2014). On the other hand, the British Medical Journal (BMJ) supported the bill, stating that ’people should be able to exercise choice over their lives, which should include how and when they die, when death is imminent’ (Delamothe et al., 2014: 4349). While the right to exercise choice is one of the main arguments presented by those who support the bill, choice may not be an option for all. As McCartney (2014: 4502) argued:
… our death is always potentially imminent, and we clearly do not enjoy omnipotent choice over our lives; otherwise, people in poorer areas would live just as long, with as much money and power as those more comfortably off. Indeed, ’choice’ in healthcare is often proffered as a consumer interest, pandering to the profit motive in our dissolving NHS. The choices that affect our lives most — income, status, employment — have more to do with the luck of the environment we grow up in than with personal volition. Why should ’choice’ over death remain uninfluenced by the bad luck of our environment? And if such choice is paramount, why doesn’t the BMJ argue for assisted suicide at any other point in life, not just in terminal illness? Also, we can’t be sure that the law will be properly followed. … The care of dying people is already difficult. It makes me uncomfortable when articulate, middle-class people want more so-called choice, when they may hardly know of the stresses and vulnerabilities of others.
Issues were also raised concerning the conceptualization of ’mental capacity’, upon which the proposed bill relies. Price et al. (2014) explored how the experts presenting evidence to the Commission on Assisted Dying conceptualized the ’mental capacity’ of patients requesting assistance for their death. Findings from this qualitative study suggest that ’mental capacity’ was considered as a central safeguard in the proposed bill. However, its conceptualization remained inconsistent. While ’mental capacity’ could be defined within the legal ’cognitive’ definition of capacity (i.e., a person will be considered mentally capable unless significantly cognitively impaired), it can also be defined within the grounds of autonomy, rationality, voluntariness and motivation. The authors argued that more work is needed to establish consensus as to what constitutes ’mental capacity’. Furthermore, frameworks need to be in place to support professionals in determining ’mental capacity’ in practice.
In a systematic review examining the attitudes of health professionals, patients, carers and the public on assisted dying in dementia, Tomlinson and Stott (2014) found that health professionals held more restrictive views towards assisted dying than the public, patients and carers. However, these opinions varied depending on the severity of a patient’s condition and capacity. Age, ethnicity, gender and religion also appeared to influence people’s attitudes towards assisted dying. Similarly, a systematic review by Vezina-Im et al. (2014) compared physicians’ and nurses’ motivations to participate in assisted dying. A total of 27 studies were included in the review. Findings suggest that physicians and nurses showed motivation to practise voluntary euthanasia when they were already familiar with this process. However, motivation may vary according to medical speciality. This can also be influenced by patients’ prognosis and depressive symptoms.
In a qualitative study in New Zealand, Malpas et al. (2014) presented reasons as to why some older adults would oppose physician-assisted dying. Findings suggest that participants’ personal experiences of good death strengthened their views that speeding the dying process is unnecessary. Religious reasoning and beliefs also contributed to their attitudes. ’Slippery slope’ worries too were raised that reflected concerns about the potential risk of making this practice the norm in the future. Additionally, there were concerns about potential abuses if this process were legalized. As a participant recalled from a conversation with a family member: ’She thought that I should be euthanized. If I was overseas, Holland, or somewhere they would put me out of my misery. And she actually said to me, “If you were my dog, I would shoot you to put you out of your misery” (Malpas et al., 2014: 356).
The taken-for-granted assumption that underlies arguments for assisted dying is the belief that the quality of life for such individuals is so severely reduced that it makes it unendurable and is bound up with a rhetoric of the moral imperative to relieve suffering. The entrenched disablement prejudices held by health care professionals result in unsupported assumptions that the quality of life of people with disabilities is diminished in such a way that it makes it more unendurable, more hopeless and more limited than that of people for whom other factors have diminished their quality of life (e.g., someone whose family has been killed and finds life unbearable without them). However, as suggested in a study by Terrill et al. (2014), resilience can mitigate the impact of secondary symptoms (e.g., pain and fatigue) on the quality of life of people with long-term physical disablement.
In addition, assisting certain disabled people to die would not be countenanced. For example, it is unlikely that assisting the survivors of genocide to die would be countenanced, despite them enduring extreme suffering, pain, disablement and distress. There are a number of forms of ’assisted-dying’, including a person ending their own life by their choice using a tool supplied by someone else; someone else ending a person’s life with their consent; someone else ending a person’s life without their consent; and withholding life-sustaining treatment (with or without that person’s consent). All of these forms of ’assisted-dying’ have been applied to disabled people. That ’assisted-dying’ can refer to the act without the consent of the person who dies is particularly worrying. It has been suggested that many disabled people fear that episodes of illness may be viewed as an opportunity to ’allow’ them ’merciful’ release (Marks, 1999a), and there may be some basis for this. In states and countries where assisted suicide has been legalized, people with physical and psychiatric disabilities have been helped to die both with and without their consent. One cannot doubt that physician-assisted dying happens unofficially on a daily basis in hospitals and homes everywhere.
Brain Death and Taking Organs for Transplantation
Brain death is irreversible brain damage causing the end of independent respiration and is regarded as indicative of death. When a person is brain dead, the brain can no longer function. The brain will not recover function and the person is considered dead. The doctors can support the heart with medication and also provide oxygen through a ventilator, or breathing machine. The person’s body can be supported for days and, sometimes, even weeks. However, without a functioning brain, the person can no longer be considered as living. A brain death diagnosis is final and cannot be reversed. A person with brain death never awakens.
There is a gap between the number of organ donors and patients on waiting lists for transplantation. Vital organ transplantation is premised on ’the dead donor rule’: prior to the harvesting of organs, donors must be declared dead according to medical and legal criteria. Donors are also required to give their informed consent to the taking of their vital organs. Doubts can arise about whether individuals diagnosed as ’brain dead’ are really dead in accordance with a biological conception of death — the irreversible cessation of the functioning of the organism as a whole. A basic understanding of brain death is required in giving and obtaining valid, informed consent to serve as an organ donor. There is a need for reliable empirical data on public understanding of brain death and vital organ transplantation.
There is a need for increasing awareness of the potential for organ donation in EOL care. In Sweden, Nolin et al. (2017) reported that the number of organ donations after brain death (DBD) per million population (pmp) was 14.9, with an almost 10-fold variation from 4.3 to 40.6 DBD pmp between counties. Women were 60% more likely to become donors compared to men. An EOL decision was found in only 50.9% of possible organ donors.
Shah et al. (2015) reviewed evidence on public attitudes to brain death and vital organ transplantation. They identified 43 articles with approximately 18,603 study participants. The data suggested that people generally do not understand three key issues: (1) uncontested biological facts about brain death, (2) the legal status of brain death, and (3) that organs are procured from brain dead patients while their hearts are still beating and before their removal.
Discussion about death, especially one’s own, is a delicate subject and even tabooed. Yet plans and recorded decisions are necessary if viable organs for transplantation are to be obtained to save the lives of others. Families need to discuss personal wishes about organ donation in advance in case brain death should be an issue in the future. Unsurprisingly, family members dealing with a brain-dead loved one who is supported on a ventilator are often unable to carry out the person’s expressed wishes to donate organs (Bresnahan, 2015).
To facilitate clear communications about brain death, Bresnahan and Zhuang (2016) published the Communicating with Family about Brain Death Scale, which assesses the willingness of individuals to communicate about brain-dead organ donation with their family members. This scale is one step towards facilitating more open discussions about organ donation, and it could help save more lives of people waiting for transplants.
In some countries, informed consent is not obtained prior to harvesting of organs. It is estimated that more than 90% of the organs transplanted in China before 2010 were procured from prisoners. Paul et al. (2017) reported a continued prevalence in China of organ procurement without consent from prisoners or their families as well as procurement of organs from incompletely executed, still-living prisoners. This practice violates international ethics standards and fundamental human rights.
1. More research on the quality of dying and death should incorporate the voice of families and relatives.
2. Research is needed in determining ways in which more people can obtain their preference to die at home.
3. Large-scale studies on the characteristics of high-quality end-of-life are needed to inform improvements.
4. The auditing of medical and nurse training to reveal knowledge and skills gaps relevant to death and dying is needed.
1. Kübler-Ross (1997) constructed a five-stage theory of death and dying experienced when terminally ill patients face their own deaths: denial—dissociation—isolation, anger, bargaining, depression and acceptance. This theory receives little empirical support.
2. Attempts to define a ’good death’ suggest that people may wish to achieve many different tasks during the process of dying. Three themes about dying and death are control, autonomy and independence.
3. The quality of death is higher for terminally ill patients receiving hospice care than for similar patients receiving conventional care.
4. High-quality EOL care aims to reflect each individual patient’s values and wishes, promote compassionate communication and provide family-oriented care.
5. End-of-life care leads to a reduction of non-beneficial, unnecessary and aggressive physical care, avoids prolongation of dying, prevents patient suffering and allows less wastage of precious intensive care unit resources.
6. Many people who need EOL or palliative care are not receiving them. EOL and palliative care need to be improved and made more accessible, which requires a greater allocation of resources.
7. Oncologists and other staff dealing on a day-to-day basis with dying patients face challenges and barriers in trying to cope, in accessing social support and in gender-related expression of emotion. Targeted interventions are needed for staff on managing and coping with grief.
8. Increasing interest in physician-assisted death has been occurring since its legalization in 1997 by Oregon’s Death with Dignity Act. Although euthanasia and physician-assisted suicide are increasingly being legalized, they remain relatively rare, and primarily involve patients with cancer.
9. Research on public attitudes to brain death and vital organ transplantation suggests that people generally do not understand (1) the biological facts about brain death, (2) the legal status of brain death, and (3) that organs are procured from brain dead patients while their hearts are still beating and before their removal.
10. Education programmes are needed to increase clarity and reduce confusion about brain death and organ donation in an attempt to increase the availability of much-needed organs.