May 2006, Vol 28, No. 5 |
Discussion Paper
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Meeting the challenges of achieving a 'Good Death'Rodger Charlton HK Pract 2006;28:215-223 Summary Caring for a dying patient is difficult and has many challenges, not least that it can make a practitioner reflect on their own mortality and present a conflict in their own thinking as to how a death can be 'good'. Nevertheless, family physicians are involved in the care of patients from birth through to death and have an important position to co-ordinate palliative care and facilitate a 'good death' in those who are dying. Palliative care is more than the science of symptom control and should be holistic care. This requires a doctor to work in partnership with a dying patient and meet the many challenges described in this paper to enable a good death. These include provision of a listening ear, honesty and recognition and acknowledgement of the process of anticipatory grief and the isolation to which it can lead. The family physician needs to strive to provide continuity of care, to be the patient's advocate, to ensure adequate pain control and to seek the appropriate input of other team members. The greatest challenges are being available to a patient and reviewing them regularly without prior request to anticipate and prevent crises and keep them at home until almost their last days of life if practically possible. Provision of care should be accompanied by hope. The patient must be informed that the purpose of palliative care is to alleviate suffering, ensure continuing quality of life and enable a good death when the time comes. 摘要 照顧臨終病人既困難又富有挑戰性，醫生不但要仔細審查有關自身死亡的問題，還要面對何為善終的矛盾思想的沖突。然而，家庭醫生要照顧病人一生 — 由出生至死亡，而且在協調姑息治療方面，扮演重要的角色，從而幫助臨終病人得以善終。姑息治療不只是控制症狀，而是全人治療，需要醫生及臨終病人建立良好的合作關係，共同迎接本文中所闡述的各種挑戰，包括：細心聆聽、誠實、知識和對預期的悲傷和孤獨感的認知。家庭醫生需要盡力為病人提供持續照顧，成為病人的支持者，確保痛楚得以舒解，並且尋求其他成員的支持。最主要的挑戰是隨時為病人提供治療和定期評估，防止危機發生，儘可能使病人留在家中直至臨終的日子來臨。醫生要懷著希望照顧病人。同時，也應當告訴病人姑息治療的目的是減輕痛苦、確保生活質量當死亡來臨的時候，得以善終。 Introduction The concept of a good death may be seen by the general public as a contradiction in terms, because if you ask the question, "Does anyone want to really want to die?", the answer is "no". However, this may not always be the case. What if you or a patient is seriously ill? Illness with no chance of cure changes one's perspective on whether a deteriorating quality of life makes the prospect of continued living tolerable. There may then be a reluctant resignation to be released from suffering and to die a good death where that suffering is minimised during the remainder of the person's life through palliative care. The aim of this paper is to highlight the notion of a good death, the challenges that this presents globally to all doctors and the role of palliative care in meeting these challenges. This paper is intended to stimulate reflection from the reader regarding palliative care and the concept of a good death. It ends with the views of the author who is a family physician in the UK. Palliative care There are many definitions but for the purposes of this paper the following short summary uses terms from several definitions including that of the WHO. Palliative care is the alleviation of suffering, which maybe physical, psychological, emotional, social or spiritual for a person with a far advanced progressive life-threatening disease which is incurable and where the prognosis is limited. The acclaimed founder of the hospice movement in England, the late Dame Cecily Saunders, described how palliative care should ensure continued quality of life for such patients and thus enable them "to live until they die".1 It is in this sense that if a patient receives adequate palliative care until they die that a good death has been facilitated and achieved.2 Possible factors that act as a hindrance to achieving a good death This paper now considers the possible factors and challenges that may hinder the family physician and their team as they seek to facilitate a good death for a dying patient:
Attention to palliative care in medical education Despite the hospice movement (initiated in 1967) it can be demonstrated that many terminally ill patients all over the world still suffer. It is also clear that there is an increased need for instruction on the management of dying patients and the philosophy of special care that is required for the dying, whether from cancer or other diseases. Many medical schools still provide minimal training in palliative care. Assuming that the birth rate is roughly equal to the death rate and that most medical schools provide 10 weeks or more teaching on the art of obstetrics and bringing a life into the world, why is it that proportionately so much less time is spent on teaching about palliative care and enabling patients to have a good death? Both curriculum topics are recognised internationally as specialties where knowledge and skills are required by generalists and students. The transition from 'being' to 'unbeing' In my own experience, palliative care is difficult both to conduct as a clinician and to teach. For the reasons that this paper will outline, palliative care has many challenges for clinicians who strive to achieve a good death for their patients. It is my impression as an experienced practitioner that as the years go by, it doesn't get easier as one might naively expect, but rather more difficult, particularly as you realise your own turn is getting nearer. One could be criticised by specialists for saying that symptom control is the easy bit. It is not easy unless you have the knowledge, but this can be learnt. What cannot be learnt easily is how to talk with the person who asks, "Am I dying?" or "What will it be like" or says, "I am frightened." If you immerse yourself in such intimate and personal consultations, it is difficult. This is because it reminds you of your own mortality. Freud summarised this dilemma;3 "Our own death is indeed unimaginable and whenever we make the attempt to imagine it we can perceive that we really survive as spectators ... at bottom no one believes in his own death, or to put the same thing in another way, in the unconscious every one of us is convinced of his own immortality." This dilemma reminds a practitioner of the conflict in his or her own thinking as to how a death can be good. At the same time it inevitably enhances sensitivity to patients as the practitioner endeavours to be empathetic and tries to imagine what it is like to be in this predicament as a patient. Care must be taken to avoid a process of counter-transference of one's own repressed negative feelings about death to a dying patient. A country doctor recognised this through the impact of illness writing;4 "As soon as we are ill we fear that our illness is unique. We argue with ourselves and rationalize, but a ghost of the fear remains. And it remains for a very good reason. The illness, as an undefined force, is a potential threat to our very being." The author (Gavin Maxwell) of the novel, "Ring of Bright Water", went to live in a crofter's cottage in the Highlands of Scotland to escape life in the big city of London with his otter 'Mij'. He later developed terminal cancer and he describes the most difficult aspect of this as the "private and solitary moment of un-being"5 and the realisation that soon he would no longer exist. The greatest challenge of achieving a good death is recognising this situation with a patient and helping them try to come to terms with this difficult prospect, thus facilitating the transition from 'being' to 'un-being' and enabling a person to re-order their priorities and let go. A lesser challenge is providing good symptom control if it is required. Palliative care is holistic medicine This is a recognition that palliative care requires whole person and hence holistic care. Suffering is experienced by persons, not merely bodies, and is much more than a set of symptoms. Good palliative care involves the physical, psychological, emotional, social, cultural and spiritual care of a person who is dying. In the UK specialists in palliative care are referred to as consultants in palliative medicine. Although these doctors think holistically, it is an unfortunate title as it suggests that they are primarily involved in the science of symptom control. A more appropriate title would be consultants in palliative care. The family physician is only one member of the primary health care team that has a role in enabling a patient to achieve a good death. This doctor can oversee and organise a care plan negotiated with the patient and their family and ensure good symptom control where this is required. Community nurses and specialist palliative care nurses have a vital role to play, particularly as many of a dying patient's needs are not physical. Similarly, there is a role for a social worker and spiritual adviser and where requested, professionals to help a dying person make preparations in relation to their will and a funeral. Hospices can also play an important part through establishing symptom control where this is proving difficult, and providing day centre care and respite care to give the family a break as their burden of care will be particularly heavy and constant. The doctor should be aware of what is available for the patient in order to be their advocate in meeting and co-ordinating their care needs. The importance of the concept of spirituality When a clinician thinks holistically, one of the most difficult concepts to explain is that of spirituality. It helps first to recall people you have cared for professionally in the past whose physical symptoms were alleviated but who continued to suffer from what might be best described as 'spiritual pain'. This may be an issue relating to a religious belief and their reconciliation with God, or it might reflect resignation to the fact that they cannot be cured without progression to the psychological stage of acceptance.6 Spiritual pain is a misunderstood and often unrecognised concept that is therefore usually overlooked when trying to facilitate a good death for patients. Two authors in the USA help to focus one's thinking on this. Bolen wrote;7 "Illness is both soul-shaking and soul-evoking for the patient and for all others for whom the patient matters." The spirit is the essence or the unique 'being' of a person and is not necessarily about religious faith and it is perhaps this notion in palliative care that is least understood. Puchalski wrote;8 "Spirituality can be defined as whomever or whatever gives one a transcendent meaning in life. This is often expressed as religion or relationship with God, but it can also refer to other things: nature, energy, force, belief in the good of all, belief in the importance of family and community. Spirituality plays an especially prominent role in a patient's experience with terminal illness, the dying process and death." The challenges of spiritual pain What of religious faith as a part of spirituality? Every doctor has their beliefs, values and attitudes of which they need to be aware. There is a good chance in a multicultural society that they will differ from those of the patients that consult with them. It can occur that these views and ideas are unintentionally imposed on patients. Some educators have suggested that a checklist be created of different cultures so that doctors are aware of important differences, but it is not that simple. Within each culture, there are differences and variations according to orthodoxy or liberalism and the influence of living in a particular culture, for example, an Anglo-Saxon culture in the UK. Facilitating a good death may require recognition of a patient's religious faith if they have one and how their spiritual needs may be met, one of which may be atonement with their creator. Spiritual pain is an area that requires further research. Spiritual pain is not a new concept; it is a component of the 'total pain' about which Dame Cecily Saunders wrote nearly 20 years ago.9 An important aspect of this may be conflicts that have occurred in a patient's life, particularly within their family. The result may be emotional and psychological pain which impacts on the person's spirit and is difficult to treat. A role of the physician is to recognise this kind of pain and facilitate reconciliation, thus offering the opportunity to say good bye to loved ones. This will reduce their 'total pain' and enable the process of 'letting go'. Unfamiliarity with death can make care difficult What are the other factors that make facilitating a good death difficult? Perhaps the most significant is the fact that the majority of the public have not seen a dead body and dying has been 'medicalised' in institutions where the majority of people die. As a result, death has been transformed from being an accepted everyday occurrence and natural part of the life cycle, into a taboo subject. In a paper on the subject a previous editor of the British Medical Journal wrote;10 "Dying has been medicalised, professionalised and sanitised to such an extent that it is now alien to most people's daily lives." Dying is a natural process And yet, death is part of the natural life cycle. Sir Francis Bacon the seventeenth century philosopher wrote; "To die is as natural as to be born" (Sir Francis Bacon, Essays, 'Of Death'). Whether we like it or not it should be seen as a natural process as death is a 'rite of passage' in which we will all participate as a family member, a care provider, and eventually, a patient. Birth and death are diametrically opposed Another difficulty is that birth and death are diametrically opposed in the life-cycle. Birth provides new life and a new member into the family, whereas bereavement takes away a life and results in the loss of a family member. Both events create emotions and reactions of considerable depth and intensity. Facilitating the transition from 'being' to 'un-being' that was described earlier illustrates this. The need for honesty One of the most frequently described challenges when trying to achieve a good death is truthfulness. What do we tell a patient who requires palliative care when a cure is no longer possible? A patient needs to know the truth so that informed consent to palliation is possible, but more than this to allow them time to prepare, and to overcome a wall of silence and its associated isolation. In the 1950s it was common practice to hide the truth of, for example, a terminal diagnosis from a patient for fear of 'upsetting' them that nothing more could be done. As a consequence, the doctor and their family knew what the problem was, but the patient had not been informed, the so-called 'conspiracy of silence'. A paper entitled "The Cement" written by the well-known palliative care specialist from Oxford, Robert Twycross, reiterated that doctors dispel the notion that, "There is nothing more than can be done for you". Even 40 years following the establishment of the hospice movement this phrase is still used, a phrase which takes away the most important part of palliative care: hope. It reminds one of the early 1900s when the literature referred to dying patients as 'hopeless cases' or 'incurables'. Although honesty means communicating to a patient that they cannot be cured, it is never true to say that nothing more can be done. Indeed, such a statement results from an ignorance of palliative care.11 Telling the patient the truth must be accompanied by hope. The message should be that the purpose of palliative care is to alleviate suffering and ensure continuing quality of life, and that where possible a patient dies with their disease, but not necessarily of it, thus enabling them to "live until they die".1 View of Hong Kong citizens on factors associated with a good death A 2004 study in Hong Kong examined what the public (719 responses) thought was important to achieve a good death, on a scale of 0 (for not important at all) to 10 (extremely important).12 Ratings greater than 8 were obtained for the easing of suffering for both patient and their family. Similarly, ratings greater than 7 were recorded for the desire to remain independent and to be reconciled with family. Similar ratings were recorded for other issues surrounding spirituality, e.g., for having had a meaningful life, being mentally ready, having their funeral prepared and their last wishes fulfilled. Although the place of death was not seen as important, having one's family present at the deathbed was. The difficulties of dying at home In the UK, research suggests that most people would prefer to die in their own homes if that were practically possible. However, there is no 'right' place to die in order to achieve a good death. In the UK only about 30% are able to die in their own homes.13 In fact, it might be said that it matters less where we die than how we die. This idea is supported in Hong Kong.12 Dying at home in Hong Kong raises the issues of restricted personal space (if a person were to die in their apartment), with its impact on the surrounding family, neighbours and death certification procedures. Nevertheless, it is important to maintain someone in their own home with good palliative care until shortly before their death. This may occur through home care teams and hospice day care centres. Support of the informal carers (family and friends) is vital, yet despite the best of intentions they are often neglected by the professional carers. They need to be able to grieve before the death of a loved one, have the option for respite care to avoid crises and not feel guilty that they have 'failed' their loved one in any way. Progress of palliative care in Hong Kong In Hong Kong the literature indicates considerable progress in palliative care in the last 20 years. There has been a paradigm shift from the biomedical to the bio-psycho-socio-spiritual-cultural model, from a disease-centred approach to person-centred care, from 'doing care' to 'being care' and from prolongation of survival to enhancement of meaningfulness in the last journey (and hence a cultural and person-specific concept of a good death).14 Furthermore, formal and informal caregivers play complementary roles crucial for effective home care. Family coping skills, good symptom control, and appropriate emotional support help to transform this burdensome journey into one that is rewarding and fulfilling.15 Recognising the point at which curative treatment has become futile Facilitating a good death requires the recognition of the transition point from curative to palliative care. But there is a dilemma, as it is difficult to define a point where such a transition occurs. Furthermore, the simplistic notion of a transition turns out to be complex, as palliative care to relieve suffering and curative care may be provided at the same time. Indeed some treatments used for cure, such as chemotherapy and radiotherapy, may also be used in palliation. It may therefore be difficult to define a point where curative treatment stops and palliation begins, and a patient may opt for both. However, the point at which curative treatment becomes futile needs to be recognized by the patient and the clinician, as further treatment aimed at a cure may then not only be useless but in itself cause suffering, e.g. with chemotherapy. In other words, if curative treatment is continued where there is no prospect of success, there would be the unnecessary prolongation of poor quality life. A management plan needs to be negotiated and informed consent gained for continued curative treatment or agreement that this point has been reached so that a smooth transition to palliative care occurs. A survey of teaching staff of the Hong Kong Institute of Education supports the practice of withdrawing and withholding life-sustaining treatment in dying patients when treatment is considered futile and supports the use of advanced directives.16 The use of a 'healing contract' The art of good dying requires a healing contract in which there is a philosophy of caring as well as curing. Healers should acknowledge their limits and ensure that the patient and their loved ones are prepared. This should enable acceptance as part of a healing process, by coming to terms with a disease where a cure is not possible. Such a contract will therefore avoid medicalising death and prolonging the dying process. It is important that patients are able to die their own deaths and avoid such scenarios as a 'managed state' and 'medical captivity'.17 Suffering can be equated with inadequate palliative care. Where this occurs an individual requires urgent review by a specialist. The psychological stages of dying Facilitating movement through the psychological stages of dying, so-called anticipatory grief, is an area regularly addressed in palliative care education. It was originally described by Kubler-Ross who had a very profound influence on palliative care.6 The stages are: anger, denial, bargaining, depression and acceptance. They describe an alteration in the life dynamics of the patient as they cope with the emotional stress of changes in their role and image and the potential loss of self. It is also necessary to try to facilitate these changes for the patient's family and friends (informal carers) and their professional carers so that they too can enter the patient's life-world. It can, however, be debated whether the psychological stage of acceptance is ever reached for most dying patients or whether a psychological stage of resignation to fate occurs where instead they adjust to the true nature of their predicament rather than accept it.18 The Austrian born theologian, Ivan Illich, who has written extensively on this subject, states; "At the moment of death I hope to be surprised". He believes that our role as practitioners is to "arouse the dying person's willingness to accept the inevitable"17 and to try and anticipate a person's fears. Personal experiences of facing death When a doctor attempts to facilitate a good death they should meet the needs stated by the patient and not necessarily the needs as perceived by the family or for that matter the doctor. People are terminally ill only once and cannot come back and tell us what it was like. However, doctors can learn a lot from each other, by sharing their experiences and difficulties encountered when trying to facilitate patients to have good deaths. There is no 'right' way to die. Every provider group can recall regret-filled stories; it is also important to record these accounts and the personal reflections of patients. One such account was provided by a doctor with testicular cancer in the 1980s and addresses what other doctors can do to facilitate a good death.19 He wrote: "An analogy to living with cancer is solitary confinement: once inside the prison cell you are trapped; you can walk around, scrutinise the walls until you know every crack in the plaster, and look out the window. It is impossible to step over the line dividing the cell from the corridor. The most useful people are those prepared to come inside the cell, sit down, and spend some time with you. Doctors often forget that they are also human." In a more recent personal view, Sherwood writes20: "I don't want to die, and I shall put up a fight. But, if I lose the match, I want to make a good end of it"......... "We shall all lose the match, and need to consider how to make a good end of it."......... "Gripping the steering-wheel, in courage, decency, and no hope, is another way to a good end." Suppression of grieving in the modern world Palliative care should enable a doctor to facilitate a good death. However, the process does not end with the death of the patient, but rather the ongoing care of those that are left grieving. Unfortunately, death is no longer accepted by many in society as the natural conclusion to the life cycle. Grieving may be further reduced with the hurried, clinical, impersonal, increasingly bureaucratic disposal of the corpse by cremation. Reminders of the deceased are sometimes discouraged within society as people now feel uncomfortable with them; instead the bereaved are advised to 'keep busy'. In addition, the institutionalisation of death, its deritualisation, the pressure of society to limit mourning, the decline of the extended family, the breakdown of the community and the drift from religion and cultural traditions, have all combined to oppress grief and isolate the bereaved. The effect of bereavement on the doctor Bereavement is difficult for the practitioner too. Bereavement replaces the perception of immortality and gives rise to the shocking awareness of inevitable death, rapidly replacing the feeling that it is a long time off. Younger doctors often do not appreciate that for some patients reduced quality of life can make their continuing existence intolerable. The focus of younger doctors is more likely to be on curing and saving lives. Sometimes this may compromise palliative care. Perhaps this is why there are increased requests to write advanced directives (living wills) by people in the latter part of their lives to ensure that they receive palliative care when curative treatment is deemed by them to be futile. Perceptions of dying change with age The will to live and perception of death changes with increasing age. Comments that older patients suffering as a result of multiple chronic diseases and sometimes cancer may include: "Don't get old" or "You enjoy yourself while you're young" or "I lived too long" or "I wish I could die and not wake up" or "I would like to die in my sleep". In such scenarios death can be viewed as 'good', a release, and not a 'medical failure'. A good death is part of healthy ageing and the natural life-cycle. It is not the end of opportunities but the beginning in areas such as personal growth, letting go, re-ordering priorities and fulfilling dreams. A UK medical student wrote recently; "To have a good death means neither being starved or overdosed by a profession deemed as caring."21 Principles of a good death What are the principles of a good death? Twelve principles are recorded by Smith in his editorial in the British Medical Journal in 2000 as follows10:
Euthanasia does not provide a good death This paper has not addressed the issues surrounding euthanasia. For the author the request for euthanasia indicates inadequate palliative care and avoidable suffering. Euthanasia is not a provision of good dying but is usually a failure of communication and palliative care. In this context, the idea that euthanasia can enable a good death is an oxymoron. Palliative care can facilitate a good death When considering the question; "Is there such a thing as a good death?" I read the writings of a doctor, Paul Egermayer, who was in this situation himself and wrote the following poignant letter to the New Zealand Medical Journal on August 10th 2001. Sadly his obituary appeared adjacent to the letter. "When to the sometimes bleak prospect of death, which waits us all, is added pain, anguish may result. ......... To you I send a message of hope. A testimonial to the wonder of MORPHINE and a personal tribute, from someone who is usually very cynical, to that most marvellous product of the twentieth century medicine, PALLIATIVE CARE. It really does work." Conclusion - the author's viewpoint Family physicians are involved in the care of patients from birth through to death and are in an important position to co-ordinate palliative care. This requires a doctor to work in partnership with a dying patient and meet the many challenges described in this paper to enable a good death. These include provision of a listening ear, honesty, recognition and acknowledgement of the process of anticipatory grief and the isolation to which it can lead. The family physician needs to strive to provide continuity of care, to be the patient's advocate, to ensure adequate pain control and request the care of other primary care team members and specialists when this is required. The greatest challenges are (i) being available to a patient; (ii) reviewing him/her regularly without prior request; (iii) anticipating and preventing crises; and (iv) keeping the patient at home as close to the last days of life as possible. Optimal medical professionalism involves altruism and good palliative care makes tremendous demands on the individual doctor. Ideally, the family physician should become a committed companion on the journey of a dying patient. Where cure is not possible the doctor should ensure palliation, alleviation of total pain and facilitate inner healing as a patient moves into a stage of acceptance. Key messages
Rodger Charlton, MD, FRCGP, FRNZCGP Correspondence to: Dr Rodger Charlton, Institute of Clinical Education, Warwick Medical School, University of Warwick, Coventry CV4 7AL, U.K. Email: rodger.charlton @warwick.ac.uk References
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