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Rapid Responses: Rapid Responses published:
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humanistic or humane
- Stephen Brown (23 April 2002)
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Dilemma for Palliative Medicine
- Susan P Closs (24 April 2002)
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Illich 26 years later: re-tuning societal expectations from medicine
- Giovanni B Frisoni (1 May 2002)
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palliative medicine - a postmodern speciallity with lost ideals?
- Marianne Carol Klee, Higginson Irene (21 May 2002)
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Technicalisation rather than medicalisation of dying.
- Sioned E Evans, Richard Scheffer, Medical Director. (12 July 2002)
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Never say die
- Stephen R Workman (11 July 2003)
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Eliminating the Polarization of a Good Death and Medicalization
- Jen L. Lapum (12 July 2003)
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Direction of palliative care
- Yvonne Y Mak (14 July 2003)
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Palliative Care Teaches Ethical Reflection
- Denise M. Dudzinski (22 July 2003)
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A Good Death: Who Decides?
- Ruth Grant Kalischuk (1 August 2003)
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Stephen Brown, GP Brookside Group Practice, Brookside Close, Earley, Reading, RG6 7HG
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I thoroughly enjoyed your paper except for what I wonder is a sloppy use of English. We need to balance technical intervention with a humane rather than a humanistic approach to dying patients. A humanistic approach is based on a non-religious philosophy based on liberal human values, whereas a humane one is benevolent, compassionate and inflicts minimum pain. Let's strive to be humane but not humanistic. |
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Susan P Closs, Consultant in Palliative Medicine Ty Olwen Palliative care service, Morriston Hospital, Swansea NHS Trust , SA6 6NL
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Dear Sir, Palliative care has tried to encourage medicine to be gentler in its acceptance of death but there is still little evidence of widespread success in this endeavour despite informal and formal teaching in undergraduate and postgraduate education. Doctors are challenged by more and more complex and interventional treatments to effect cure or prolong life. The introduction of clinical governance and the scrutiny of practice has enhanced the desire for good outcomes. The inevitability of death remains for many doctors a sign of failure, which insinuates itself between the professional and patient and hinders communication. However, in addition to the persistence of a deep-seated premise held by the professional, there is also the media-driven raised expectation of the public in the ability of the medical profession to cure. Death was an acceptable outcome as the avoidance of suffering in situations when there was no available treatment option. For many relatives and families and increasingly, patients, death is no longer an option to be considered. Autonomy and patient choice put increasing pressure on the clinical team who even with the recognition that the doctor’s duty of care is to the patient, still endeavour to take into account the wishes of the family. Frustration and the perception that the “profession or service has let them down” and a misplaced understanding of “rights”, now frequently are vented in aggressive behaviour towards the doctor. Palliative Medicine is at a crossroads. Palliative Care has come of age and the philosophy has global acceptance, with practice catching up. The claim that specialisation, integration and the development of an “evidence based” model of practice and organisation are crucial to long term viability, is a comforter for specialists who are now at a watershed. In a new or adolescent specialty, which has as yet a paucity of evidence, there is a new dilemma. For most consultants in Palliative Medicine, the knowledge base has been acquired from working with patients and families living and dying with cancer. Cancer is becoming a chronic disease. Transposition of the lessons learned in the oncology setting is appropriate in some symptom control for patients dying from other diseases. Assessment and management of advancing cardiology, respiratory, renal and neurological illnesses demand a new approach. Not many of today’s Consultants feel confident that they are equipped to take up this baton and certainly we are not expanding the experience of our trainees quick enough to prepare them for “palliative care for all” – despite the recognition several years ago, that this route was the likely direction. Are we about to see the renaissance of the generalist physician? Many of the more senior consultants currently have alternative or dual professional roles – mostly in management or education and training. Is this a reflection of the “lack of clarity and confidence in the definition” of their medical role? Or is it an indicator of insufficient challenge or lack of medicalisation in the practice of palliative medicine, in a specialty where deliberately members of the multidisciplinary team have evolved such important roles in holistic and spiritual care? Or does it bear out the concerns of Cicely Saunders twenty years ago, for the wellbeing of doctors entering the speciality, expecting to spend their whole working lives in palliation and terminal care? It is my view that the future of palliative medicine in cancer care will be a hybrid of the medical oncologist and palliative care physician - a true integration of care but how the specialty encompasses the needs of patients with end-stage non-malignant disease will continue to be a significant challenge. |
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Giovanni B Frisoni, Research Head IRCCS San Giovanni di Dio - FBF, via Pilastroni 4, 25125 Brescia, Italy
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In his recent paper (1) David Clark addresses the challenges facing palliative physicians in their effort to promote acceptance of death amidst medical services that regard death as something that can be avoided through technical intervention. I wish to propose a recent personal experience to claim that the attitude of medical services is at least in part the result of pressure from unrealistic expectations from patients and the society. A few weeks ago, my father developed a severe disease for which he was treated at the highest standard of care, but without success. After 3 weeks of fever of unknown origin, a diagnosis of huge mesenteric liposarcoma extending to the retroperitoneal and pelvic space was made and debulking surgery was performed. Diagnosis was made by some of the best geriatricians in the newest and up-to-date hospital, and surgery by some of the best surgical and anesthesiological team around. Unfortunately, surgery failed due to duodenal necrosis and perforation, and re- intervention after one week failed also due to anastomotic rupture and bleeding. After a few days, it became clear that life functions were progressively deteriorating. During one of my usual evening visits, I caught the glimpse of a human figure clad in green surgical garments walking towards myself from the opposite side of the hallway, a white medical coat casually thrown lightly on the shoulders and wavering rithmically with the stride like the mantle of a medieval hero. Suddenly, I felt a fleeting but intense sense of anger to that faceless and nameless human figure, a physician and a colleague, who was unable of such a minimal enterprise as saving my father’s life. I believe that the feeling of anger for the unavoidable failures of Medicine is diffused throughout the society and is responsible for many of the present difficulties faced by physicians in taking care of patients. The litigation on medical errors, the suspiciousness on some medical research such as cloning, and the resort to alternative medicine or pre- scientific therapies are a few examples. Unrealistic societal expectations represent a significant hurdle to palliative care by increasing hope of cure and decreasing acceptance of life events in the terminal phase of life. Educational interventions should be undertaken in schools and the media to re-tune societal expectations to a more realistic view. This, far from depriving people from hope, will help accept the deeply human events of pain and death. References. 1. Clark D. Between hope and acceptance: the medicalisation of dying. BMJ 2002;13;324:905-7 |
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Marianne Carol Klee, specialist Finsencenteret , RigshospitaletCopenhagen, Denmark, Higginson Irene
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Having read Clarks article “Between hope and acceptance: the medicalisation of dying?” we would like to comment on and to challenge some of his views. Clark states that ‘Palliative medicine was developed as a reaction to medicalisation’ – a word with a very negative implication - ‘and that it has now moved away from its earlier ideals into becoming a postmodern speciality contributing to the medicalisation of death’. He defines medicalisation as synonymous with the sense of the profession reaching to far into the body, into the mind and even into the soul itself. But good medical practice at the end of life knows “when enough is enough”, accepts that the disease-process has taken over and that cure is no longer possible. More importantly it does not to see this as a defeat and give up the patient, but rather sees it as change of focus from cure to palliation and together with the patient continues to strive for a life with as few symptoms as possible, so that the patient can continue the life that they want to have. This is what palliative medicine is trying to instil into the medical world. It is a counter argument, from inside, to the continuous intensive technological development, rather than appropriate technological development. One overwhelming problem in modern medicine today is that we know so much and can do so much, with too little understanding of the consequences. So the challenge has become knowing when to do what and when to stop. In palliative medicine the focus is not on what can be done but what the patients’, and those close to them, need. Only symptoms that bother the patient are treated and always following a discussion with the patient and family of benefits versus potential side-effects and burdens. Clark regards the goal of Palliative Medicine as “good quality of life for the patient” and so rightly argues that that is not something clinical medicine alone can achieve. We agree. The problem is the misuse of the word “quality of life”: just as “health related quality of life” is ”a measurement of some of the symptoms that may influence the patients quality of life” the goal of palliative medicine can be seen as: “Helping the patients manage as many of the symptoms from their disease as possible in order to give the patient the possibility to achieve the quality of life they aim for”. Clark also argues that Palliative medicine has move toward the “problems of living rather than the dying population” and that this fits well into the “desires of the patients in modern culture were we dread not so much the state of death as the process of dying”. Yes, the early hospice movement had an emphasis on the making the last few days of life as possible and only took in patients that were clearly dying. For most patients the worst of their suffering is over by then, they can see an end to their miseries. The natural death process is ensuring that the patient becomes less and less aware of what is going on. The important issue here is to provide an environment were this can take place with dignity, and then let the patient go down the path that nobody can follow. The real challenge is in relieving the unnecessary suffering of human beings who have encountered a disease that results in not only a shorter lifespan than expected but also physical symptoms that undermines their possibilities for doing the things that are most important to them. The emphasis is on physical symptoms, including anxiety and depression, because that is area were we, as medical professionals, can expect to make a contribution to the goal of a good life before death. We should not expect of ourselves that we can change the psychological and social history of the patient and the way he or she has lived his life nor the way he wants to go on living it. What we can provide is an understanding and accepting environment that has knowledge about the travel the patient is embarking on. This brings us back to the most challenging comment in Clark’s article: “Yet in print and in their daily work specialists in palliative care seems to lack the clarity and confidence when defining precisely what they do and how it differs from other health care”. The emphasis in palliative medicine is on many of the things that has been forgotten or lost in the very technical world that medicine has become today. This includes: (1) a thorough clinical assessment of all the problems that distress the patient; (2) a priority of the issues together with the patient; (3) using appropriate treatment based on clinical assessment and diagnosis; (4) only asking the patient to participate in investigations if the outcome has a clear consequence for the patients treatment; (5) always considering the burden/benefit of any treatment for the patient and family; (6) communication with the patient and family so that it is their needs that are being meet and detailed information is given so that the patient and family understands what is happening and can become an active partner rather than a passive recipient; (7) developing an understanding of the psychological, social and existential issues the patient and their families may have to face so that we can support them in the process and maybe provide explanations and guidelines for the patient and family in a world they have not had to face before; and (8) considering the ethical consequences of the possible actions not only for the patient but also for the family and the society. None of this is different from the rest of the medical world. What is different is our emphasis on these issues rather than on the more mechanical disease related issues. If these principles could become an integrated and functioning part of the medical system that would be the best thing that could happen to palliative medicine. Then we have achieved our goal of better and more humane care for all patients and we could concentrate on developing better symptom relief, and support and advice the clinicians about the smaller percentage of patients with complex physical, psychological, social or existential issues. Yours truly Specialist Marianne Klee
Professor Irene Higginson
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Sioned E Evans, Specilaist Registrar in Palliative Medicine Rowcroft Hospice, Avenue Road, Torquay,TQ2 5LS Devon., Richard Scheffer, Medical Director.
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Editor – We would like to suggest the word “technicalisation” instead of “medicalisation” in Professor Clark’s article on the medicalisation of dying (1). Aronson points out that –isations are derogatory words (2), which imply an invasion or an adverse control over a concept or an idea which had previously belonged to humanity or society. The Oxford English Dictionary defines medicalisation as: “to involve medicine or medical workers in”. We believe that most people would agree that the involvement of medical care in palliation is important. In fact, as Clark points out, the rise of palliative medicine in Britain in the 1950’s and 60s came about because of the medical neglect of the dying. It is not the involvement of medicine or medical personnel that threatens the loss of early ideals but the growing development of available technology. We would agree that the challenge facing palliative care physicians is to decide when it is appropriate to use this technological expertise. Just because it is available does not mean that it has to be used. Appropriate use of technology should not and does not mean that the other facets of the individual, social, psychological, spiritual are being ignored. They are not mutually exclusive. Clark is right to emphasise the need for there to be an understanding of when technology becomes invasive and not supportive. But this is not a new problem. It is in fact not the medicalisation of dying that is the problem but the inappropriate use of technology. Hence our argument for the word technicalisation. S E Evans R Scheffer Rowcroft Hospice, Avenue Rd Torquay Devon. TQ2 5LS
1 Clark D. Between hope and acceptance: the medicalisation of dying. BMJ 2002;324:905-907. 2 Aronson J. When I use a word…Medicalization. BMJ 2002;324:904. |
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Stephen R Workman, Assistant professor Halifax Nova Scotia
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One of the main obstacles to the care of dying patients is the taboo against speaking or writing about impending death. A few simple tests to see how you or your colleagues are doing. Try reading a selection of charts of deceased patients. Patients do 'poorly,' 'fail to respond,' or are 'palliative,' but I would wager that you will find very few patients described as 'dying' or 'near death.' (Some dying patients even 'demand' futile treatment such as CPR in the event of a 'cardiopulmonary arrest,' when asked to 'consent' not to receive it.) You should also see how often and how vigorously you avoid talking about death when speaking to a patient likely to die. I am always surprised at how difficult I find it to talk openly about death and dying, even when it clearly is necessary and appropriate and I have carefully thought out what I am going to say. If compasionate care of dying patients is to occur physicians need a structured and consistent approach to talking with patients about death and dying. Competing interests: None declared |
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Jen L. Lapum, R.N. University Health Network, M5G 2C4
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A Post-modernist Perspective Death and dying are an inevitable part of each one of our lives, and thus, deserves the attention and examination of such authors and health care professionals as David Clark. Clark explores the medicalization of death, speaking first on the historical evolution of palliative care and then the countervailing problems. In addition, Clarke uses Ivan Illich’s original critique of medicalization as a theoretical framework, which ultimately imparts an antagonistic outlook on medicalization. However, upon taking a post-modernist perspective on such a phenomena of dying and medicalization changes the whole enterprise; post-modernism necessitates importance of the contextual variables including the uniqueness of both the caregiver and the one receiving the care. And I propose that it is the uniqueness of the person that determines the negativity or positivity of medicalization and dying. Putting the Corporeal Needs Aside Medicine and technology, and health care in general, are known to overstep the boundaries of the body, as Clarke so vehemently states. In such cases when death is resisted—when it is only inevitable, or when technology is lengthening the dying process, as opposed to providing a ‘good death’ or a comfortable death. Clarke warns against the creeping in of medicalization when palliative care specialists focus on symptom management, which could be a reality depending on the person. Health care providers need to be cognizant of the importance of not just focusing on the corporeal needs of the dying person, but caring for more than just the body and caring for the person holistically. One cannot deny that symptom management is an essential part of palliative care; however, I deny that it is the ‘heart’ of palliative care. From my perspective palliative care is holistically caring for a dying person and the people surrounding this person. The heart of palliative care is the dying person. The medicalization of death is deemed negative or positive depending on the social and human context. Clarke negates to mention the significance of the health care provider in deeming the medicalization of death as negative or positive. However, Clarke does state that it is a challenge for physicians to balance medicine/technology with humanism/ethics. But it can be done and it has been done! Health care providers that place the person at the center of care can achieve a balance between humanism and technology. And at the same time improve the quality of the dying process for the dying person. A balance between humanism and technology is possible. And when the balance is achieved within the dying process, health care professionals find it an honor to be present with the dying person, in spite of the existing sadness and end to the process and to life. The goal of palliative care is what the patient wants in the dying process. Therefore, when a dying person dies – this should not be considered a failure for the health care provider or medicine in general. Death is the inevitable end of the dying process. Health care provider’s concern and focus should be on the process. The Good Side of Medicine and Palliative Care Innovative medicine and technology have provided some phenomenal effects on dying. More than anything, it has provided dying persons with options and control. Patients can control where they die, whether it be in a hospital or in their home. Also, it has provided patients control over their symptoms when dying. Nevertheless, it cannot be emphasized enough to note that the health care provider imparts a technological realism. Health care providers are the experts in regards to medicine and technology, and play a key role in how patients perceive and embody that technology. In addition, it must be stressed that – to what extent a dying person embodies the technology/medicine is unique and remains a relatively uncharted area of research. A point of contention with Clarke’s paper is when he notes that palliative medicine “lacks a specific disease, bodily organ, or life stage to call its own” (p.4) and thus creates a lack of clarity in what palliative medicine is and what they do. On the contrary, palliative medicine embraces Clarke’s quotation. The beauty of palliative care is that it does not marginalize a disease or life stage, but embodies a dying person with any disease or any life stage. Clarke concludes that palliative physicians are challenged like all physicians to reconcile the technological side of medicine with humanism. However, if health care professionals truly embrace the theory of patient- centered care, then technology will inadvertently, but fortunately slide into the background. Medicalization/technology does not have to be a polarized opposite to a good death, but can enhance the dying process for the interest of the patient. To draw to an end, the outcome of the medicalization of death and the dying process is unique and contingent not only on the dying person, but also the health care provider. Competing interests: None declared |
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Yvonne Y Mak, Medical Officer Bradbury Hospice, A Kung Kok Shan Road, Shatin, Hong Kong
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Dear Editor, Professor David Clark discussed the pros and cons of moving palliative care upstream and shifting the focus beyond terminal care. I believe this integration is necessary if our aim is to provide a seamless service for patients facing life-threatening and progressive disease. Palliative care needs to outreach its services for 'whoever', 'whenever' and 'wherever' - 'whoever' meaning the provision of care for both cancer and non-cancer patients and support for their relatives; 'whenever' meaning that care is not dependent on the phase of disease but on the patients' needs during the various crises points of their illness journey; and 'wherever' meaning that care should not be confined to its hospice walls but beyond. Palliative care healthcare professionals as educators and researchers are pre-requisites for promoting compassionate and humane end of life care in the acute setting and the community. In promoting the holistic concept, they have an advisory, supportive and educational role in empowering the skills of frontline healthcare professionals in basic pain and symptom control, sensitive communication and bereavement support. They can also promote the usefulness of qualitative research, as the palliative care recognises the need to explore the patients' subjective experiences within their cultural, social and temporal contexts in order to understand their genuine needs. But in moving palliative care upstream, this specialty must not forget its philosophy, that in accepting death, carers must attend to their patients' whole being. The essence of palliative care lies in the carers' compassion, empathy, intuition and creativity in helping their patients live authentically till death. The provision of good death does not focuses on the moment of death but the illness journey. Medicalisation of palliative care in a negative sense would mean too much emphasis on symptom analysis while overlooking the significance of psycho-spiritual care and simplifying the complexity of human suffering. It would be sad when suffering becomes only a problem to be solved, with the illusion that suffering can be controlled totally with medical interventions. Competing interests: None declared |
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Denise M. Dudzinski, Asst. Professor, Medical History & Ethics University of Washington School of Medicine Seattle, WA 98195-7120
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The last sentence in David Clark’s article is provocative. He writes, “The challenge for palliative physicians is no different to that facing their counterparts elsewhere in medicine: how to reconcile high expectations of technical expertise with calls for a humanistic and ethical orientation for which they are largely unselected and only partially trained.” Until dying patients once again flock to churches, synagogues, and temples rather than hospitals, the expertise and skill of medical professionals will provide the foundation for good palliative care. But the palliative care philosophy also prioritizes spiritual and moral reflection, which is why spiritual care and ethics professionals are often members of palliative care teams. Those of us who play these roles recognize that many of the health care providers with whom we work are “only partially trained” in ethics. Ethical deliberation is an arduous and systematic process and few clinicians are formally trained in it. Instead clinicians learn ethics through medical training and mentoring, informed in large part by the tenets of their professions and their personal values. A shift from curative to palliative care reflects a shift in values, so the multidisciplinary palliative care consultation can be an opportunity to teach ethical reflection to health care professionals. By encouraging early advance care planning (ACP), for example, palliative care teams help prepare both patients and providers for a shift from cure to palliation. Colleagues learn to systematically assess when the burdens of cure outweigh the benefits, how to discuss this with patients, and how to recognize when patients want to discuss it with them. By modeling ACP discussions, palliative care teams teach listening and communication skills and find imaginative ways to respect cultural and religious practices. With palliative care as a guiding philosophy, physicians partner with their patients, sharing the burden of deciding when to shift from cure to palliation. Either patient or physician can say the time is approaching. When the patient’s values take center stage, we can better negotiate the shift from cure to palliation because the care team’s medical agenda is in concert with the patient’s and family’s agendas. During the transition to palliation, patients and their families are engaged in some of the most difficult ethical reflection they will face. We can help them by facilitating cooperation between various ethical frameworks – those of various health care providers (all of whom may not agree that palliative care should be initiated) and the moral worldviews of patients and families. Likewise, with better ethics training, physicians will be better able to distinguish the patient’s values from those of his/her friends or family, critical for making decisions on behalf of a previously competent patient (using substituted judgment standards). In the end palliative care and ethics consultation have much in common. Both teach ethical deliberation by modeling it. Competing interests: None declared |
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Ruth Grant Kalischuk, Associate Professor School of Health Sciences, University of Lethbridge, 4401 University Drive, Lethbridge, AB T1K 3M4
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A Good Death: Who Decides? Grant Kalischuk, R., RN, PhD, Associate Professor, School of Health Sciences, University of Lethbridge, Lethbridge, Alberta, Canada David Clark (2002) outlines six elements of a “good death” in modern Western culture in his article entitled “Between hope and acceptance: The medicalisation of dying.” My comments focus on one of these elements, namely “Death according to personal preference and in a manner that resonates with the person’s individuality.” This element implies that a ‘good death’ is synonymous with respecting health care consumers’ autonomy. Such autonomy is generally encouraged and promoted within most health care settings. However, in certain situations, although autonomy is espoused as a standard of care, health care consumers are met with resistance when they exercise their autonomy. This may occur when health care consumers choose to use complementary and alternative medicine (CAM) to fortify and enhance end of life care. Indeed, this is a controversial subject within the health care arena and one with implications for end of life care. One question that arises is, “Who decides if CAM is helpful and meaningful in a ‘good death’?” CAM is a broad-based term encompassing both complementary and alternative therapies. Complementary therapies (CTs) are defined as those therapies that are used in conjunction with conventional care (Alberta Association of Registered Nurses [AARN], 1999; Cole & Shanley, 1998; Keegan, 1998). Typically CTs are pleasant, non-invasive, and beneficial to one’s health, sense of well being, and quality of life (Stevensen, 1995; Cassileth, 1999a). In contrast, alternative therapies (AT) are those therapies that are used instead of conventional therapies (AARN, 1999; Cassileth, 1999a, 1999b; Keegan, 1998). For the most part, ATs tend to be expensive, invasive, potentially harmful, and in conflict with conventional care (Cassileth, 1999a; Ernst & Cassileth, 1998). Cassileth (1999b) further distinguishes between CTs and ATs, stating that, in most instances, CTs are supportive therapies aimed at symptom control whereas ATs are unproven and potentially harmful therapies frequently promoted as cancer cures. There is much agreement that the use of CTs among cancer patients has grown considerably in the past few years. In fact, one study suggests that as many as 86% of cancer patients use some form of CT during the course of their disease trajectories (Brigden, 1995). The literature also reveals much information about CT and AT usage among this population including: the broad range of therapies currently in use, a history of secrecy surrounding health care consumers’ use of these therapies, health care professionals’ general lack of knowledge about CAM, and many concerns regarding the efficacy and “provability” of many therapies. Within Western culture, it is generally acknowledged that our knowledge base specific to CAM is still in its infancy. Readily apparent is the fact that this burgeoning, consumer-driven health care trend is steadily gaining momentum. Frisoni (2002), in his response to Clark’s article entitled “Illich 26 years later: Re-tuning societal expectations from medicine,” comments that alternative therapies are an anger-based societal response to the failure of medicine; further he refers to them as a “difficulty” that confronts physicians while taking care of patients. It may be that health care consumers are frustrated by the limits of modern medicine. However, this view, while conforming with the medicalisation of dying, seems limited in its scope. In contrast, I believe that the CAM movement is but one sign that health care consumers are exerting their autonomy by exploring new possibilities and taking personal responsibility for achieving the highest possible level of health and well being. Moreover, I contend that this change within the health care system presents not only a challenge, but also offers a great opportunity for both health care professionals and consumers alike. If we, as health care professionals, engage ourselves in learning with and from health care consumers, we might be surprised to find that several positive changes can be achieved through a collaborative effort. First, as health care professionals, we need to become knowledgeable about CAM. Many health care professionals possess expertise in the area of critical appraisal, an asset enabling them to evaluate existing and new treatment modalities. Of importance, health care professionals’ savvy ability to access and critique evidence-based literature addressing CTs and ATs is an invaluable resource to offer health care consumers. Health care professionals are well positioned to play an important role in ensuring that those nearing the end of life have current and accurate information that will enable them to make truly informed decisions about their health care. Since scientific evidence supporting the safety and efficacy of many therapies is still lacking, health care professionals can assist those who are terminally ill in deciding which therapies are helpful and which are harmful. Second, health care professionals would be wise to form partnerships with those wishing to access CAM as a feature of their end of life care and as a means of ensuring that a ‘good death,’ according to the wishes of the dying person, is achieved. Collaboration between health care providers and users is of critical importance. As health care professionals, we are responsible for remaining open and receptive to dying persons’ perspectives including their philosophies of life and death, their personal preferences regarding health care treatment modalities (including CAM), and their ideas about what constitutes a ‘good death.’ Some dying persons may request help in addressing their spiritual needs and thus use CTs such as prayer and music therapy. In combination with conventional treatment, other persons who are dying may choose to use meditation and massage to alleviate their pain. Still others may simply be striving to enhance their sense of health and well being through the use of nutritional supplements. Who is in the best position to decide what constitutes a ‘good death’? Client autonomy is often considered the hallmark of a ‘good death,’ a point well made by Clark in his thought-provoking article in the BMJ. It follows then, that dying persons and their families need to be actively involved in health care decision making at every step of this final journey, including situations in which they opt to use CAM as part of their end of life care. It is recognized that health care professionals play an integral role in end of life care. However, it is those who are dying and by extension, their families, who ultimately determine which health care therapies (e.g., conventional, complementary, alternative) are helpful and meaningful in promoting a “good death” during end of life care. References Alberta Association of Registered Nurses. (1999). Standards for registered nurses: Alternative and complementary therapies in nursing practice. Edmonton, AB: Author. Cassileth, B.R. (1999a). Complementary and alternative cancer medicine. Journal of Clinical Oncology, 17(11), 44-52. Cassileth, B.R. (1999b). ‘Complementary’ or ‘alternative’? It makes a difference in cancer care. Complementary Therapies in Medicine, 7(1), 35- 37. Clark, D. (2002). Between hope and acceptance: The medicalisation of dying. British Medical Journal, 13(324), 905-907. Cole, A., & Shanley, E. (1998). Complementary therapies as a means of developing the scope of professional nursing practice. Journal of Advanced Nursing, 27(6), 1171-1176. Frisoni, G.B. ((2002). Illich 26 years later: Re-tuning societal expectations from medicine. British Medical Journal. Keegan, L. (1998). Getting comfortable with alternative and complementary therapies. Nursing, 28(4), 50-53. Stevensen, C. (1995). Surveys in complementary therapies: Assessing the needs of people with cancer. Complementary Therapies in Nursing and Midwifery, 1(4), 110-112. Competing interests: None declared |
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