Select Committee on Health Written Evidence


Memorandum by Voluntary Euthanasia Society (PC 25)

  (1)  The necessity that all patients have adequate pain relief at the end of their life. We are concerned that this is currently not the case. We urge for a review and resolution of this serious issue.

  (2)  The need for all healthcare professionals to have "good enough" knowledge, awareness and understanding about end of life issues and care. We are concerned that this is currently not the case. To begin to rectify this situation, we urge for better education on end of life issues for both undergraduate and post-graduate healthcare professionals.

  (3)  The importance of pro-choice Living Wills for dying patients to help ensure that professional-to-professional and professional-to-patient communication is optimum, and that patient's needs are met.

  (4)  The need for better palliative care to continue to provide physical, social, emotional and spiritual care at the end of life. We highlight our concern that palliative care, particularly specialist palliative care is perhaps too focused on medical/physical care at the expense of social, emotional/psychological and spiritual care of a dying individual. We recommend a review to clarify whether this is really the case, and if so, take measures to rectify this accordingly.

  (5)  The need for palliative care to recognise and work with the fact that despite the best quality palliative care—this sadly, does not meet the needs of all dying people.

  (6)  The importance for patients in being able to choose where they wish to die. We highlight our concern that despite the fact that many patients wish to die at home, not enough people are able to manage this.

1.  All dying patients have the right to full pain relief

  1.1  The way we treat our dying says much about the way we treat our living.

  1.2  In the 21st century there are still reports of many people dying in pain. For example, research finds that 50% of all patients who died during hospitalisation "experienced severe pain at least half of the time during their last three days of life" (1). Cancer Bacup have also found that 70-80% of cancer patients experience pain as a result of their cancer or treatment (2).

  1.3  This is a serious issue that needs to be addressed.

  1.4  We recommend that all healthcare professionals who work with dying patients at some point in their careers (ie every healthcare professional) need to be properly educated on pain relief at the end of life.

  1.5  We also recommend the development of pain relief guidelines for all healthcare professionals, along with suitable discussion and education of these guidelines. This will help ensure that all patients have access to adequate pain relief during their dying process.

2.  All healthcare professionals need to have good enough knowledge of basic (ie generic) palliative care. In line with this, all patients need to receive adequate palliative care throughout their dying process

  2.1  The quality of our dying is as important as the quality of our living.

  2.2  We are concerned that there is a lack of healthcare professional knowledge and understanding of the dying process and the needs of the dying. For example, recent research found medical students, junior hospital doctors and GPs to lack training and understanding of, end of life care and their role in this care (3).

  2.3  Another study has found that patients with lung cancer did not receive adequate palliative care. Heart failure patients were given little information on their disease or how long they had to live and there was also no co-ordinated approach to their care for most (4).

  2.4  It is clear that there needs to be a serious re-think as to how services can be improved for all dying patients.

  2.5  As a first step, we recommend that all healthcare professionals are trained to have basic knowledge of end of life care (ie generic palliative care) and a basic understanding as to how to provide this care.

3.  Pro-Choice Living Wills are a positive way to increase professional and patient communication, awareness and understanding about needs and wishes at the end of life

  3.1  A Living Will (otherwise known as an Advance Directive) enables patients to state their medical treatment wishes in the event that they should become seriously ill and unable to communicate. Case law makes it clear that Living Wills which set out clear terms regarding refusal of treatment are legally binding documents. Thus for example, a patient can make an advanced refusal of treatment when competent that remains valid and applicable should they later become incompetent to make their own decisions about medical treatment.

  3.2  As the current case of Leslie Burke who is challenging the GMC guidelines on withholding and withdrawal of treatment highlights, people also need to be able to make a legally enforceable request to have life-sustaining treatment. This is why we strongly advocate pro choice Living wills that enable the patient to be in control of medical decisions at the end of life. The VES pro-choice Living Will was prepared by top doctors and barristers and has been especially welcomed by the disabled community, because it gives people the option of choosing life-prolonging treatment. In line with this, dying individuals need to have optimum choice in their care pathway and Living Wills can help ensure that this occurs.

  3.3  Living Will documents can help ensure that there is increased communication and understanding about patients' needs and wishes, both between professionals involved in the care of a dying patient, and between professionals and the patient themselves. This is with regards to for example, treatment decisions throughout an individual's illness and DNR orders at the very end of life.

  3.4  We strongly recommend that professionals and the public become increasingly educated and aware of pro-choice Living Wills and their potential usefulness within end of life care. We would also recommend that all healthcare facilities develop clear policies on Living Wills. In line with this, it would be of ultimate importance that once these policies are in place, all health care staff have awareness and understanding of, and respect for, these policies. In line with this, we strongly recommend that the choice of life-prolonging treatment should become legally binding on healthcare professions

4.  Specialist palliative care provides wonderful physical/medical care for dying patients, but there is also a need to ensure that this is provided in balance with spiritual, emotional and social care of dying individuals

  4.1  We strongly endorse the palliative care philosophy of physical, emotional, spiritual and social care of a dying person. However, through our discussions with healthcare professionals and patients alike, we are concerned that particularly within specialist palliative care, there may sometimes be too much of a focus on the "physical/medical" care of dying patients.

  4.2  It is crucial that all palliative care is delivered as a "team" approach, and that all professionals involved in a patient's care at the end of life (eg doctors, nurses, psychologists etc) are included, and their views listened to and respected. It is only if this is achieved that true holistic care can be delivered.

  4.3  We recommend a large-scale pluralistic (ie multi-professional) study with professionals who work in palliative care to clarify the validity (or otherwise) of our concerns regarding the delivery of palliative care. If our concerns are validated, we strongly recommend that this issue be addressed accordingly.

5.  Despite the best palliative care in the world, for some people this will not meet their needs. Palliative care needs to be open to exploring and developing new ways to respond to such people

  5.1 The National Hospice Council (1) and the BMA (2) both recognise that despite optimum palliative care, for some people, this is sadly not enough.

  5.2 Recent research by Linda Ganzini (3) in the USA has found that despite optimum palliative care some people will still opt for the ending of their life (ie patient assisted suicide). For such people, the need for control over one's life and the lack of dignity they can feel at the end of their life cannot be over-estimated. Unfortunately for such people, the provision of more palliative care can actually be a double edge sword (3, 4) that can lead them to feel an increased sense of frustration, dependency and loss of control.

  5.3 We believe that palliative care needs to be open to exploring and understanding the reasons `why' this is the case, and through this, develop and provide palliative care services that can meet the needs of all people.

6.  Individuals need to be able to live and die in the place of their choice

  6.1 Increasingly in our modern society, more and more people are dying in hospital. This is despite the fact that most people would prefer a home death.

  6.2 Studies have found that approximately only a quarter of patients with cancer die at home (9, 10). This is despite evidence that a considerably higher proportion would choose to die there (11, 12)

  6.3 We strongly highlight the need for services to focus not only on providing optimum end of life care for patients, but also on enabling patients to die in their place of choice. This will ensure that an individual's dying is of a high quality and help relieve not only the suffering of the patient throughout their dying process, but also the bereaved family who are left behind.

February 2004


  1.  Rich, B. 2000. A prescription for the pain: The emerging standard of care for pain management, 26 Wm Mitchell L. Rev. 1. Also Tucker, K. 2003. A piece of the Puzzle: Bringing accountability to failure to treat pain adequately. Journal of Palliative Medicine, 6 (4), 615-617

  2.  Cancer Bacup.

  3.  Barclay S., Wyatt P., Finlay I. & Todd C. 2003. Caring for the dying: How well prepared are general practitioners? A questionnaire survey in Wales. Palliative Medicine, 17, 27-39

  4.  Murray et al. 2002. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ, 325, 929.


  6.  Medical Ethics Today: The BMA's handbook of ethics and law. 2nd Ed. 2004. BMA Publishing Group

  7.  Ganzini L., Dobscha SK., Heintz MD. & Press N. 2003. Oregon physicians' perceptions of patients who request assisted suicide and their families. Journal of Palliative Medicine, 6 (3), 381-390

  8.  Ganzini, L. 2003. From the USA: Understanding requests for physician-assisted death. Palliative Medicine, 17, 113-4

  9.  Seale C. & Cartwright A. The year before death. Avebury, Aldershot, 1994

  10.  Higginson IJ., Astin P. & Dolan S. 1998. Where to cancer patients die? Ten year trends in the place of death of cancer patients in England. Palliative Medicine, 12, 353-363

  11.  Dunlop RJ., Davies RJ. & Hockley JM. 1989. Prefered versus actual place of death: A hospital palliative care support team experience. Palliative Medicine, 3, 197-201

  12.  Townsend J., Frank AO., Fermont D. et al. 1990. Terminal cancer care and patient's preference for place of death: A prospective study. BMJ, 301, 415-417

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Prepared 26 July 2004