Select Committee on Assisted Dying for the Terminally Ill Bill Written Evidence

Memorandum by Ms Karen Sanders

  I am the elected Chair of the Royal College of Nursing Ethics Forum Steering Committee and a member of the Royal College of Nursing Ethics Advisory Panel; however I am submitting the following paper in a personal capacity.

  I have been a registered nurse in the UK for 21 years. I continue to practice clinically as an agency nurse. My area of clinical expertise is Intensive Care and Neurosciences nursing, which I teach along with Healthcare Ethics at the London South Bank University, London. I have previously been called to give evidence to the Council of Europe and have lectured extensively on this subject.

  I would like to confirm that I have been a member of the RCN for 10 years and in this time I have never publicly criticised a formal RCN Parliamentary submission. As this is a conscience issue and because I believe the submissions received during the RCN's formal consultation process were overwhelmingly in favour of changing the law, it is with a heavy heart that I write expressing a contrary view to the RCN's submission.

  In the interests of nursing and their patients, I feel that it would be helpful to provide some background information on why the majority of UK nurses support a change in the law.

  The arguments are as follows:

    1.  UK nurses support a change in the Law.

    2.  Nurses in the UK and abroad already help their patients to die.

    3.  The current law makes matters worse not better.

    4.  Legislation would help the nurse and help the patient alike.

    5.  Palliative care does not negate requests for assistance to die.

    6.  Assisted dying legislation can help to improve end of life care.

    7.  End of life treatment options are ethically complex and not necessarily better or worse than assisted dying.


  The Assisted dying for the Terminally Ill Bill has been developed to enable a competent terminally ill patient who is in unbearable suffering, the right to request assistance to die. In order to have their request accepted, the patient must meet stringent requirements and safeguards. Should their request be accepted, be given help to die via the doctor prescribing medication that the patient self-administers. If however the patient is unable to self-administer medication (as would have been the case for Diane Pretty), the doctor is allowed to do this for them.

  The Bill also allows for terminally ill patients to request and receive as much pain relief as they feel necessary. This is an important aspect of the Bill because currently doctors and nurses can be fearful of providing adequate pain relief due to concerns about drug tolerance, addiction or fear of shortening the patient's life.[166]

  The remainder of this submission outlines key reasons why the law needs to be changed.


  Nurses are the healthcare professionals who spend most time with patients. We are the ones who day in and day out, witness the severe and intolerable distress that can accompany patients who are dying. Indeed for many patients, it is not death they fear, but the disintegrating and often dehumanising process of dying. It is perhaps safe to say that due to the time nurses spend with patients they may feel most able to open up to us about their fears and their needs at the end of life. In the Netherlands, patients often first approach nurses about their desire for an assisted death.[167]

  It is therefore very important to take serious note of the fact that in a recent Nursing Times Survey, one in two nurses did not think it was unethical to administer a lethal injection at a patient's request. Even more importantly, two thirds of nurses supported a law on medically assisted dying. 83 per cent of such nurses viewed this should be for terminally ill patients. 31 per cent believed they should be allowed to assist patients to die.[168]

  It is interesting to note that in Oregon, a US state that has assisted dying legislation, 59 per cent of hospice nurses and social workers working are supportive of the law. A further 17 per cent remain neutral.[169]


In the aforementioned Nursing Times Survey, one in four nurses had been asked by patients to help them die. Forty-four per cent admitted to having administered prescribed interventions that may have contributed to a patient's death. Even when taking into account the principle of "double effect" (which itself is ethically complex and unclear), we can safely assume that on at least some occasions, the intention of these actions would have been to actively bring about death. Elsewhere, research has found that despite it being prohibited, nurses do help their patients to die:

    —  Asch (1996)[170] reported that 17 per cent of critical care nurses surveyed had received patient or family requests to die. Sixteen per cent had helped patients to die.

    —  Leiser et al (1998)[171] reported on nurses working in HIV/AIDS. Thirty-seven per cent had received a request to die and 15 per cent had helped a patient to die.

    —  Ferrell et al (2000)[172] found that over 20 per cent of oncology nurses had received a patient request to die. Three per cent had helped a patient receive a lethal prescription and 3 per cent had actually administered a lethal injection.

    —  Volker (2001),[173] Magnusson (2002)[174] and Schwarz (2004)[175] have all, via a more qualitative approach, found nurses to both receive requests for assistance to die and actively help their patients to achieve this.


  Due to assisted dying being prohibited, nurses who are faced with patient requests to die have no ethical codes of practice or protocols (such as those in the Bill) to help guide nurses in responding to such requests. There are also other far-reaching concerns that result from prohibition of this practice. These include:

    1.  Nurses who actually help terminally ill patients to die, do so with no guidelines, safeguards or support.

    2.  Nurses who do help patients to die are open to prosecution.

    3.  Without legislation and resulting safeguards, vulnerable patients are at risk from abuse. This can perhaps best be highlighted by studies that have found rates of non-voluntary assisted deaths to be higher in countries that have no assisted dying legislation (eg Australia[176] and Belgium[177] before legislation) than in the Netherlands.[178] Academics have cited high rates of non-voluntary assisted dying as a core reason for Belgium's 2002 assisted dying legislation.[179]

    4.  Patients may be assisted to die when alternatives such as palliative care or pain relief, may have met their needs. This concern has been highlighted by Magnusson's (2002) research. He observed that:

    "Prohibition drives assisted death underground. At present, healthcare workers who perform euthanasia determine the conditions for their own involvement. Secret euthanasia, without appropriate regulation, raises many disturbing issues. "[180]

    These disturbing issues include botched attempts (20 per cent of cases Magnusson studied), patients being ambivalent about going through with the process, and/or being given assistance to die when patients are not near the end of their life.

    5.  Due to assisted dying being prohibited, patients may be driven to seek assistance to die from their loved ones. This can have disastrous consequences (eg see Sanderson, 2002).[181] Some patients may even go abroad to places like Dignitas in Switzerland to die. Dignitas do not appear to have any clear safeguards and as a result, can help patients to die that would not meet the requirements set up in the proposed UK Bill.

  Legislation that incorporates strict safeguards as found in the Assisted Dying for the Terminally Ill Bill, is the only way to ensure these highly concerning issues do not continue to occur.


  A transparent legal system with regards to assisted dying would ensure a far safer process than is currently in place. Despite this fact, those opposed to assisted dying cite fears that legislation would destroy patient and healthcare professional communication and trust. All evidence actually shows the opposite to be the case. For example, surveys find that in Europe, the Dutch respect and trust their doctors most![182] Further, a recent in-depth European wide study supports the fact that openness and transparency of practice within end of life care enables better communication between healthcare professionals and their patients. When compared to doctors in other countries, doctors in the Netherlands (followed by Belgium and Switzerland where assisted dying is allowed) consistently communicated more with patients and their families about end of life medical decisions.[183] Doctors in Denmark, Sweden and Italy—countries that are essentially closed to open discussion about, and practice of, assisted dying—consistently communicated with dying patients and their families least.

  Belgium is the only country to include nurses within their assisted dying legislation. It is interesting to note that in this European study, Belgian doctors communicated with nurses about end of life decisions more often than doctors in any other country (this was followed by the Netherlands and then Switzerland).

  The current lack of guidelines for nurses on how to deal with requests from patients to die combined with the fact assisted dying is prohibited, serves to prevent nurses from openly communicating and exploring the needs and fears of dying patients. This is problematic, particularly when considering evidence from Oregon. Work undertaken in Oregon has highlighted that when terminally ill patients ask about receiving assistance to die, the healthcare professional openly explores the reasons behind their request. This usually results in the patient's needs being met in other ways.[184] Thus, regardless of whether a patient actually received assistance to die, patients being able to openly communicate with healthcare professionals about their needs and fears at the end of life may actually be the most important aspect of legislation. Ann Harvath, a nurse and Associate Professor and Co-Director of the Best Practice Initiative at Oregon Health Science University, exemplifies this point. With regards to Oregon assisted dying legislation (the ODDA), she comments:

    "One of the benefits that I believe has come with the ODDA is that a number of hospice nurses report it provides them with an opportunity to discuss the patient's fears related to death. Nurses get so many questions from patients about using a lethal prescription who have no serious interest in taking a lethal prescription. It opens conversations to such questions as `what are you afraid of'? Before assisted suicide, patients' fears didn't always surface so readily. "[185]


  Many professional organisations such as Macmillan[186] and the National Hospice Council[187] recognise that palliative care cannot meet the needs of all patients. In this way, even if the best available palliative care was in place across the whole of the UK, some patients will still want assistance to die. This is particularly as reasons terminally ill patients seek assistance to die are multiple and complex and cannot be simplified into singular "treatable" issues such as "pain" or "depression". For example, issues concerning loss of control, dignity and being less able to engage in activities making life enjoyable are the most commonly cited reasons for Oregonians who receive assistance to die.[188]

  Ganzini and Back (2003)[189] recently wrote an article for Palliative Medicine outlining the experience of Oregon. In this article they clarified that Oregonians who receive assistance to die are not depressed. They further commented how research has identified that there seems to be a certain "type" of person who receives assistance to die whereby:

    "The value they place on control and independence appears lifelong . . . When exposed to the exigencies of the dying process, they face dreaded dependency and loss of control not easily addressed by advanced directives and symptom management. Responding with more palliative care is a double edged-sword: Although data from Oregon support that palliative interventions can lead some patients to change their mind about assisted suicide, for other patients more care fuels fears of more dependence on others."


  Another argument against legislating for assisted dying concerns fears that this will take away from the provision of good quality end of life care. However all available evidence from Oregon and the Netherlands suggests the opposite. Palliative care in the Netherlands continues to improve and is of a high quality.[190] It has been reported that when assisted dying legislation came into force in Oregon, it served as a "wake up" call to medicine and fuelled progress in improving the quality of end of life care.[191]

  Oregon is a leading state in palliative care and this care has improved since legislation.[192] In Oregon, all patients who receive assistance to die are in receipt of hospice/palliative care or have rejected or left this care.[193] The UK Bill also ensures that any patient who requests assistance to die receives access to palliative care.


  Many healthcare professionals who oppose assisted dying view end of life care options such as "double effect", withholding and withdrawing of treatment and "terminal sedation" as ethically superior and acceptable practice. Yet, as we know, the reality of the situation is often far more complex and unclear. The complexity of end of life decision making was recently highlighted in a European study that explored end of life medical practices in ICUs. The authors concluded that:

    "The distinction between therapies intended to relieve pain and suffering and those intended to shorten the dying process or hasten death may not be so clear or easily determined. Differentiation may be difficult as intentions are subjective and private. "[194]

  The palliative care option of terminal sedation is increasingly being championed as an effective alternative to assisted dying when faced with a patient who has intractable symptoms and intolerable suffering.[195] However not all patients want to be sedated until death.[196] Terminal sedation is also an ethically complex practice, particularly when accompanied with the active withdrawal of artificial nutrition and hydration.[197] Further and in complete contrast to assisted dying legislation, within the practice of terminal sedation, the patient does not need to be either competent or the decision maker. The practice of terminal sedation also occurs with no national protocols or guidelines and thus, little is known about its actual practice.[198] As a result, it is much more likely that abuse of vulnerable patients will occur as a result of terminal sedation than because of assisted dying legislation.[199]


  The vast majority of UK nurses support assisted dying for the terminally ill. Assisted dying legislation, as highlighted by evidence from Oregon and the Netherlands, works well. Where assisted dying is prohibited, it still occurs—often with no regard for safeguards, guidelines or support for nurses who feel compelled to help their patients. Legislation improves communication and trust within healthcare and helps ensure end of life care continues to improve. The safeguards provided in the UK Bill are extremely stringent and serve to protect vulnerable populations far more than under the current legal framework. The pain relief and palliative care filter guarantee that all patients who request assistance to die have access to care options and treatments that may mean patients' needs can be met in alternative ways.

  For some terminally ill patients, alleviation of their suffering and a dignified end will best be met via an assisted death. Legislation combined with safeguards such as those found in the UK Assisted Dying for the Terminally Ill Bill enables such patients to receive their dignified end. It is essential that as the healthcare group that spends the most time with our patients, we have the humanity, the compassion, and the courage to help ensure that dying people can have this final, dignified, choice.

2 September 2004

166   McNair, H 1999. "Let's Put an End to Pain", Nursing Times 95(6): 36-37 and Solomon, M, O'Donnell, L, Jennings, B, Guilfoy, V, Wolf, SM, Nolan, K, Jackson, R, Koch-Weser, D, and Donnelley, S, "Decisions near the end of life: professional views on life-sustaining treatments", American Journal of Public Health 1993; 83: 14-22. Back

167   van de Scheur, A and van der Arend, A, "The role of nurses in euthanasia : a Dutch study", Nursing Ethics 1998; 5 (6): 497-508. Back

168   Hemmings, P, "Dying Wishes", Nursing Times 2003; 99 (47): 20-23. Back

169   Ganzini, L, Harvath, TA, Jackson, Goy, ER, Miller, LL, and Delorit, MA, "Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide", NEJM 2002(b); 347: 582-88. Back

170   Asch, DA, "The role of critical care nurses in euthanasia and assisted suicide", New England Journal of Medicine 1996; 334 (21): 1374-1379. Back

171   Leiser, RJ, Mitchell, TF, Hahn, J, Slome, L, Abrams, DI, "Nurses attitudes and beliefs toward assisted suicide in AIDS", J Assoc Nurses AIDS Care 1998; 9: 26-33. Back

172   Ferrell, B, Virani, R, Grant, M, Coyne, P and Uman, G "Beyond the Supreme Court decision: nursing perspectives on end-of-life care", Oncol Nurs Forum 2000; 27: 445-555. Back

173   Volker DL. "Perspectives on assisted dying: oncology nurses' experiences with requests for assisted dying from terminally ill patients with cancer", Oncol Nurs Forum 2001; 28: 39-49. Back

174   Magnusson, RS, Angels of death: Exploring the euthanasia underground (Yale University Press, 2002). Back

175   Schwarz, JK, "Responding to persistent requests for assistance in dying: a phenomenological inquiry", International Journal of Palliative Nursing 2004; 10 (5): 225-236. Back

176   Kuhse, H, Singer P, Baume P, et al. "End-of-life decisions in Australian medical practice", MJA 1997; 166: 191-197. Back

177   Deliens, L, Mortier, F, Bilson, J, et al, "End-of-life decisions in medical practice in Flanders, Belgium: A nationwide survey", The Lancet 2000; 356: 1806-1811. Back

178   Onwuteaka-Philipsen, BD, van der Heide, A, Koper, D et al, "Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995 and 2001", The Lancet 2003; 362: 395-399. Back

179   Deliens L and Bernheim JL. "Palliative care and euthanasia in countries with a law on euthanasia". Palliat Med 2003: 17(5); 393-4. Back

180   Magnusson 2002 ibidBack

181   Sanderson, M, A memoir: Wrong Rooms (Scribner: London, 2002). Back

182   Kmietovicz, Z, "R.E.S.P.E.C.T-why doctors are still getting enough of it", BMJ 2002; 324 (7328): 11-14. Back

183   van der Heide, Agnes; Deliens, Luc; Faisst, Karin; Nilstun, Tore; Norup, Michael; Paci, Eugenio; van der Wal, Gerrit; van der Maas, Paul J, "End-of-life decision-making in six European countries: descriptive study", The Lancet 2003; 362: 345-350. Back

184   Bascom, PB and Tolle, SW, "Responding to requests for physician assisted suicide: `These are uncharted waters for both of us . . .'", JAMA 2002; 288 (1): 91-98. Back

185   Sadowsky interviewing Ann Harvath: Ha Back

186   Cardy P. "Macmillan Cancer relief responds" Int J of Palliative Nursing 2004: 10 (5); 252. Back

187 uk/publicat.ons/text/euthanas.htm Back

188   Oregon Department of Human Services (OHS), Office of Disease Prevention and Epidemiology, Sixth Annual Report on Oregon's Death with Dignity Act. (2004) Back

189   Ganzini, L, and Back, AL, "From the USA: Understanding requests for physician-assisted death". Palliative Medicine 2003(a); 17: 113-4. Back

190   Korte-Verhoef, R, "Developments in palliative care services in the Netherlands", European Journal of Palliative Care 2004; 11 (1): 34-37 and Kuin, A, Courtens, M, Deliens, L et al, "Palliative Care Consultation in the Netherlands: A Nationwide Evaluation Study", Journal of Pain and Symptom Management 2004; 27 (1): 53-60. Back

191   Lee, MA and Tolle, SW, "Oregon's assisted suicide vote-the silver lining", Annals of Internal Medicine 1996; 124 (2): 267-269. Back

192   Goy, ER, Jackson, A, Harvath, TA, Miller, LL, Delorit, MA, and Ganzini, L, "Oregon hospice nurses and social workers' assessment of physician progress in palliative care over the past 5 years", Palliative and Supportive Care 2003; 1: 215-219 and Ganzini, L, Nelson, HD, Schmidt, TA, Kraemer, DF, Delorit, MA, and Lee, MA, "Physician's experiences with the Oregon death with dignity act", NEJM 2000; 342: 557-63. Back

193   ODHS 2004 ibid. Back

194   Sprung C, Cohen S, Sjokvist P, baras M at al "End of life practices in European intensive care units" JAMA 2003: 290 (6); 790-797. Back

195   Radbruch, L, "Reflections on the use of sedation in terminal care", European Journal of Palliative Care 2002; 9 (6): 237-8. Back

196   Meulenbergs, T, and Schotsmans, P, "Law-making, ethics and hastiness: The debate on euthanasia in Belgium", Ethical Perspectives 2002; 9 (2-3): 86-96. and Quill, TE, Coombs Lee, B, Nunn, S, "Palliative Treatments of Last Resort : Choosing the Least Harmful Alternative", Annals of Internal Medicine 2000; 132 (6): 488-493. Back

197   Quill, TE and Byock, IR, "Responding to Intractable Terminal Suffering: The role of terminal sedation and voluntary refusal of food and fluids", Annals of Internal Medicine 2000; 132 (5): 408-422. Back

198   Quill, TE, Coombs Lee, B, Nunn, S ibidBack

199   Brock, DW, "Misconceived sources of opposition to physician-assisted suicide", Psychology, Public Policy and Law 2000; 6 (2): 305-313. Back

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