Key Issues and Relevance to Oncology in an Outpatient Chemotherapy Unit

            Moving into the 21^st century has also resulted in an even greater proportion of patients having chronic illnesses (Indraprastha Apollo Hospitals, 2006).   These patients will not necessarily be dying, but they will have disease for which there is no cure and thus need active, well-coordinated total care to help them deal with their multifaceted problems.  Medical education and medical research must recognize this fact and prepare the doctors to treat these patients.  Most importantly, there is a need to identify the key issues involved in order to better understand the necessary interventions that will help assist terminally ill patients.

            The research study by Glyn Elwyn and Yvonne Yi Wood Mak (2005), ‘Voices of the terminally ill: uncovering the meaning of desire for euthanasia’ was published in Palliative Medicine and is primarily aimed to better understand the meaning of desire for euthanasia.  According to the authors, there have been countless debates among medical professionals, ethicists, academics, politicians and pro-euthanasia campaigners about the legal and ethical aspects of euthanasia (Elwyn and Mak, 2005).

            Palliative medicine has often been treated as the alternative intervention to euthanasia for terminally ill patients.  Palliative medicine is a concept of medical care that provides precisely for patients who are terminally care, and has been defined as the World Health Organization as “the active, total care of patients at a time when their disease is no longer responsive to curative treatment and when control of pain, of other symptoms, and of social, psychological and spiritual problems is paramount.”[1] Critics of euthanasia argue that palliative care is the direct contrast of assisted dying in that palliative care affirms life and regards dying as an unnatural process.  Unlike euthanasia which hastens death, palliative care neither hastens nor postpones death.  Instead, palliative care offers a support system that helps the patient to live as active a life as possible until death.  It also helps the family to cope during the patient’s illness and in bereavement (Indraprastha Apollo Hospitals, 2006).

            Even though palliative care has been argued as the alternative to euthanasia, a minority of terminally ill patients still requested for hastened death despite receiving palliative care.   The authors point out that euthanasia still remains as the rational choice for patients in order to relieve suffering, especially once all other medical interventions have failed.  According to Elwyn and Mak (2005), attempts to understand why patients still resort to requesting for euthanasia despite palliative care by proposing to answer the fundamental question of: “Why do patients desire euthanasia?” Attempting to understand the ethical and clinical responses to this issue has often lead to arguments about clinical efficacy and questions on how society and medicine view human worth and suffering.

Many doctors have witnessed patients die undignified, high-tech, and even “soulless” death and have themselves hoped for something better for their patients and the way in which they can assist them.   The difficulty here is defining exactly what a “good death” is supposed to be, and how high a priority it should be for health services.   If death, for instance, were regarded as a defeat in a medical setting, then it would not be high priority.  But if a good death is meant to be understood as the culmination of a good life, then it must be a priority.   The problem with issues regarding what is a good death is that one size will never fit all.   People want to be as different in dying as in living, and different cultures, times, and religions also have strong influences, as well as different concepts, of what a good death is.  Other patients want it sudden, while others may prefer it slow.  Others may opt for a quiet death with minimal medical involvement.  A few may chose to kill themselves, while other people would prefer to be killed.  Even if countries that have legalised euthanasia, it has been shown that few people chose to die that way, thereby suggesting that maybe it is not as important a medical issue as it seems.  However, legalising euthanasia remains a raging debate, plus combine it with people wanting increasing choices and options on how they are to die.  The baby boomers in particular are unlikely to accept the squalid end that may happen in a health service preoccupied with life at the expense of death (Smith, 2003).

Doctors are likely to have a key role in assisted dying, and should decide where they stand, and why.   Lord Joffe’s bill on assisted dying for the terminally ill, and in the debates of the Select Committee, the diagnosis of dying as one of the most crucial that a doctor must make took front and centre during the discussion.   Doctors consistently overestimate the time patients have left to live, and to help their patients to a good death, they must recalibrate themselves and recognize that death is closer to each one of us than we think (Delamothe, 2005; Smith, 2003).   It goes back to the fundamental question Elwyn and Mak (2005) throw at us: “Why do patients desire euthanasia?”

An overview of the article shows that the findings by Elwyn and Mak (2005), based on an hermeneutic approach, illustrate a timeline from previous wellness to approaching death through a proposed clinical framework in dealing with patients desiring death.  The five elements involved in this framework are: 1) reality; 2) perception; 3) anticipation; 4) desire; and 5) holding environment.

The authors also proposed a moral framework for clinical intervention, involving the holding environment by incorporating connectedness, care and respect within clinical mandates.  The findings were gathered from a selected sample of advanced cancer patients who wanted euthanasia despite receiving palliative care.  Six of the participants underwent unstructured interviews which were audiotaped, transcribed and analysed by the authors.  This approach was adapted by Elwyn and Mak (2005) in order to allow in-depth exploration and interpretation of the patients’ lived experience. Elwyn and Mak (2005) further point out that euthanasia requests cannot be take at face value but require in-depth exploration of their covert meaning to ensure that the patients’ needs are being addressed adequately.  They conclude that the desire of euthanasia cannot be confined to physical or psychosocial concerns pertaining to advanced cancer, but actually indicate hidden existential yearnings by the patients for connectedness, care and respect, as understood within the context of the patients’ lived experience (Elwyn and Mak, 2005).

The relevance of this article in oncology, particularly in an outpatient chemotherapy unit, would be application of its proposed clinical and moral framework in dealing with patients desiring death.   Reality, perception, anticipation, and desire are important interventions within the framework suggested by Elwyn and Mak (2005), but in an outpatient chemotherapy unit, the conclusions as to the holding environment in particular presents an important intervention.   Clinical mandates recommended by Elwyn and Mak (2005) for the holding environment includes identifying a holding environment which is congruent with the patients’ unique personhood, identifying their significant others, and in defining individual sense of belonging.  This is particular helpful in an outpatient setup wherein the patients come in and out, and usually undergo a painful procedure that will hopefully stave off death for a few more months.

The holding environment proposed framework by Elwyn and Mak (2005) is actually similar to the multi-disciplinary approach in palliative care which likewise encompasses the patient, the family, and the community in its scope.  In palliative care, similar to euthanasia, cure is no longer possible, but the former aims to control symptoms and the quality of remaining life by maintaining comfort and function.   It continues to remain as playing an important role in advanced diseases such as HIV infection, neurological diseases, chronic end-stage respiratory, gastrointestinal, hepatobiliary or cardiac diseases (Indraprastha Apollo Hospitals, 2006).

Credibility of the Article – Authors, Research Methodology, Supporting Evidence, Conclusions/Recommendations Made

The Assisted Dying for the Terminally Ill Bill was proposed to legalise both euthanasia and physician-assisted suicide for those with a terminal illness in the UK.  A House of Lords Select Committee was convened to scrutinise this Bill and published its report based on the findings and evidence presented in the committee, with such report debated in Parliament on October 10, 2005.   The written and oral evidence submitted to the Select Committee represented a wide range of views on “assisted dying,” with much of the evidence coming from countries which have legalised euthanasia or physician-assisted suicide, such as Netherlands, Belgium, Switzerland, and Oregon, USA.  The evidence covered dealt with the practicalities and issues involved in ending a life, as well as the legal procedures and safeguards in place in the countries which have legalised such medical interventions (Finlay, et al., 2005).

            This article by Elwyn and Mak (2005) was one of the written evidence submitted to the Select Committee for the Assisted Dying for the Terminally Ill Bill.  Together, Elwyn and Mak presented a Memorandum of called ‘Voices of the terminally ill: uncovering the meaning of desire for euthanasia’ which was later published in journal, Palliative Medicine (House of Lords, 2005).  Elwyn has a Research Chair at Cardiff University, is a professor in Primary Care, Primary Care Research Group in University of Wales, Swansea Clinical School, and works part time in general medical practice.  He is also an Associate Editor of the journal, Quality and Safety in Healthcare, and a visiting professor at the Centre for Quality of Care Research at Nijmegen, Netherlands (Saferhealthcare, n.d.; House of Lords, 2005).  His interests include shared decision-making, risk communication and quality improvement.  On the other hand, Mak is a Medical Officer at the Bradbury Hospice in Hong Kong, and a professor at the University of Wales, Swansea Clinical School.

            There has been very little research exploring euthanasia requests from a patient perspective prior to Elwyn and Mak’s (2005) study.  In attempting to understand their research questions of  “Why do patients desire euthanasia?” Elwyn and Mak (2005) examined what scarce related literature they could find.  Their research showed that reasons for resorting to euthanasia were due to paint, functional impairment, dependency, burden, social isolation, depression, and issues of control and autonomy.  Elwyn and Mak (2005) point out however that such related literature have been primarily lacking from perspectives of healthcare professionals, relatives, and the public, with data from patients’ perspective to be very scarce.   Only a few studies explored patients’ intentions towards their desire for death, but those patients who participated in such previous studies were neither terminally ill nor opting for hastened death (Elwyn and Mak, 2005).  In addition, these prior studies were primarily quantitative, and thus failed to explore the complexity of the subjective experience of terminal illness.

            Thus, Elwyn and Mak (2005) decided to use a research approach that would require an exploration in-depth of the innermost voice of patients who desired euthanasia, without neglecting their subjective experiences and contexts.  The methodology they adopted was compassionate and at the same time adhered to high ethical standards.  As such, the research approach they selected was an interpretive approach, and designed an in-depth qualitative study by applying the philosophy of hermeneutics (Elwyn and Mak, 2003).  Ethical approval was further obtained from the Bradbury Hospice Research Education Ethics Committee, while the study was conducted in a palliative care unit in Hong Kong over a four-month period in 2000.  The unit was composed of a 26-bedded hospice and comprehensive home care service involving a caseload of an estimated 150 Chinese patients with advanced incurable cancers.  The participants were identified by purposive sampling, selecting only those palliative care patients who expressed a desire for euthanasia.  Patients who were confused, dying, unable to communicate, or too weak or emotionally distressed were not interviewed.  Instead, the study recruited only those patients who expressed a desire for euthanasia out of their own initiative.  The data collection then made use of unstructured audiotaped interviews with each participant, with every interview lasting about 20-60 minutes.   The purpose behind the unstructured interview format was to ensure that patients’ agenda were fully represented, and that the use of dialogue would be a sensitive method in collecting data.  Patient medical records were also read for the authors to contextualise their participants’ accounts of lived experience (Elwyn and Mak, 2005).

The seven patients were identified according to the selection criteria.  One of the patients gave hints as to “not having much to say” and “feeling tired,” and her hesitation to participate was respected by the authors.  The remaining six patients’ details provided for the data used for the proposed clinical and moral frameworks recommended by Elwyn and Mak (2005).

            Both Elwyn and Mak (2005) assumed the dual role of researcher-physician during their study, to help eliminate potential biases from their patients who may feel the need to rephrase their answers in certain ways in order to please their doctor.   Furthermore, an independent team member who had no conflict of interest verified each patient’s assent to the interviews, and then reviewed them afterward to ascertain that they were free of distress.  Data analysis then involved formulating a preliminary understanding of why patients desired euthanasia before proceeding to data collection and analysis.  This included a review of related literature, which was followed by the interview process.  The data analysis involved a refining of the interpretive framework selected by Elwyn and Mak (2005), and involved a process of continual reflection, questioning and validation, occurring between the evolving interpretive framework and successive transcriptions of interviews.

            In sum, the research process used by Elwyn and Mak (2005) was very thorough and sound.  It took great care of interpreting data extensively, and in ensuring that the patients did not feel uncomfortable or bullied throughout the whole process.  Their work has been used in the Select Committee in the House of Lords, further bolstering the credibility of their work, in addition to both Elwyn’s and Mak’s medical experience.

Relevance of the Article to Professional Practice – Key Issues and Conclusions/Recommendations

Involving patients in making decisions about their medical care is a very important advocacy in the medical profession.  Elwyn and Mak’s article was very encouraging, informative, and stimulating, not only in their findings, but with the great care they used in collecting and analysing their data to ensure it adhered to high ethical standards but still remained compassionate to the patients’ needs and comfort level.  The clear conceptualisation of shared-decision making, particularly with regard to euthanasia,  is a good introductory for any medical professional who is interested in the theory (Ray, 2006).

As the debate on the legal and ethical implications of euthanasia rages on, the work by Elwyn and Mak offers a significant approach in tackling evidence on hastened death – that of gathering information from the patients’ perspective (Elwyn, et al., 2003).  This inspires research in this area as to a topic which is relevant to all healthcare professionals such as myself who will inevitably have to identify my own stand as to this issue at one point in my medical career.   According to Elwyn and Mak (2005), the desire for euthanasia cannot be interpreted at face value.  The framework they provided, as outlined below, will provide for strong recommendations not only for myself but for all other medical practitioners who have to deal with terminally ill patients.

The findings of Elwyn and Mak (2005) revealed 18 minor themes, categorised into 5 major themes: 1) reality; 2) perception; 3) anticipation; 4) desire; and 5) holding environment.  The findings showed a wide range of meaning, ranging from overt physical and functional concerns of the patients to covert psychosocial and existential needs, along a timeline from previous wellness to approaching death.  The 5 themes provided by Elwyn and Mak (2005) are discussed briefly as follows:

Reality of Disease Progression.  Elwyn and Mak’s (2005) participants showed awareness of the inevitability of death, and that incurable disease and progressive deterioration meant hopelessness.   During their interviews, the patients shared about how they knew that their disease would ultimately lead to death and that they were no longer the persons they used to be.

Perceptions of Suffering for Self and Significant Others.  These perceptions were multidimensional, as reported by Elwyn and Mak (2005), ranging from physical, functional, social and psychological to existential issues of the participants.  The patients were also aware they were causing suffering for others, particularly with their loved ones and/or those tasked with caring for them.   They expressed a sense of burden, having seen what their disease did to the lives of their loved ones.

Anticipation of a Future Worse than Death Itself.   Elwyn and Mak (2005) reported that participants showed inadequate knowledge of their prognosis, and anticipated their future by recounting their own observations of other patients in acute hospitals with unbearable pain, helplessness, and indignity.   They also perceived their doctors’ communication to be unskilful, and usually lacking in clarity and reassurance.  They also felt that the time allowed for decision-making was insufficient.  One blunt word or rejection would have deep effects on these patients, and during their interviews some shared how doctors insisted on medical interventions that patients themselves had verbally opposed to earlier.  On asked why they did not attempt to express their needs more fully, participants said that they felt no one could understand their suffering, and expressing their needs would be pointless.  Their misconception is that pain would ultimately be inevitable and uncontrollable, with a future of more tumour growth, treatments, complications, increased suffering, dependency, burden, and lack of care.  Their attitude was of passive resignation to their helplessness and powerlessness (Elwyn and Mak, 2005).

            Desire for Good Quality End-of-Life Care. According to Elwyn and Mak (2005), the participants desired an escape in order to relive themselves from suffering, and to unburden their loved ones as well.   They expressed a desire for holistic care, particularly pain and symptom control, maximizing functional potential, and psycho-spiritual support.

            Holding Environment.   The findings of Elwyn and Mak (2005) show that participants desired connectedness, care, and respect not only from healthcare professionals but most especially from their significant others.  It made suffering more tolerable and continual existence meaningful, according to the participants (Elwyn and Mak, 2005).

            The framework suggested by Elwyn and Mak (2005) take into consideration clinical and moral issues that surround patients, doctors, and their families.  Euthanasia, and more profoundly, determining who is entitled to a good death, are issues that are best addressed by taken primary consideration of the patient’s voice.

BIBLIOGRAPHY

Delamothe, T. (September 24, 2005), A time to die, [Online], BMJ 331, Available from: http://www.bmj.com/cgi/content/full/331/7518/0-g?ehom   [February 2, 2007]

Elwyn, G., Finlay, I.G., and Mak, Y.W. (2003), Patients’ voices are needed in debates on euthanasia, British Medical Journal : 327 (7408), 213-215.

Elwyn, G., and Mak, Y.W. (2003), Use of hermeneutic research in understanding the meaning of desire for euthanasia, Palliative Medicine 17 (5):  395-402

Finlay, I.G., Wheatley, V.J., and Izdebski, C.  (2005).  The House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill: implications for specialist palliative care, Palliative Medicine 19 (6): 444-453.

Mak, Y.W. and Elwyn, G.  (2005),  Memorandum by Yvonne Yi Wood Mak, Medical Officer, Bradbury Hospice, Hong Kong and Glyn Elwyn, Professor in Primary Care, Primary Care Research Group, University of Wales, Swansea Clinical School

VOICES OF THE TERMINALLY ILL: UNCOVERING THE MEANING OF DESIRE FOR EUTHANASIA, [Online],  Select Committee on Assisted Dying for the Terminally Ill Bill – Written Evidence,  Session 2004-05,  House of Lords, Available from:   http://www.publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/86we19.htm  [February 2, 2007]

Mak, Y.W. and Elwyn, G. (2005), Voices of the terminally ill: uncovering the meaning of desire for euthanasia, Palliative Medicine 19 (4): 343-350.

Smith, R. (July 26, 2003), Death, come closer, [Online], BMJ 327, Available from: http://www.bmj.com/cgi/content/full/327/7408/0-f  [February 2, 2007]

Glyn Elwyn (Clinician Editor). (No date), Saferhealthcare, [Online], Available from: http://www.saferhealthcare.org.uk/ihi/aboutus/people.aspx  [February 2, 2007]

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Say, R. (2002), Book Review – Shared Decision Making – Patient Involvement in Clinical Practice, Quality Safe Health Care 11: 297-298.

[1] That Indian article