Evidence to The Commission on Assisted Dying 23 rd February 2011

Transcription

1 Evidence to The Commission on Assisted Dying 23 rd February 2011 My name is Suzy Croft and I am Senior Social Worker at St. John s Hospice, the hospice for Central London. I am a member of the Association of Palliative Care Social Workers and I currently sit on the Committee as Service User Involvement Officer. I am also a member of the Interim Board of the College of Social Work. I have been a palliative care social worker for 22 years. Palliative care social work is provided in a range of settings, including independent hospices, day hospices, NHS specialist palliative care units and oncology wards. It includes working with people with cancer, HIV and a range of other life threatening illnesses. Social work is an integral part of the multi-disciplinary team within palliative care, offering an holistic service to patients and families. Unlike many fields of social work, specialist palliative care social work is potentially a universalist service and we are used to working with a diverse range of people in terms of age, diagnosis, class, ethnicity, sexual orientation, religion and culture. In this evidence I will set out the concerns I would have, as a palliative care social worker, if assisted dying were to be legalized in this country and the impact I feel it would have on the patients, families, communities and fellow professionals with whom I work. I do not feel there needs to be any change in the law around assisted dying. For most palliative care social workers a central theme of our work would be enabling and supporting people to live their lives in the way they want at a time when they are losing control in so many ways. Few social workers would wish to dictate the decision that people might want to take about ending their lives. However such a decision to end a life, were it legalized, would not take place in a vacuum. I think that it is important to look at the context in which any legalization or related legislative change would take place and clearly that context is the society in which we live. As the Association of Palliative Care Social Workers pointed out in its 2006 position paper on Euthanasia and Assisted Dying a central concern has to be how safe is our society for those who may be defined as vulnerable or different, particularly in terms of age and impairment? How much is their contribution to society valued as against the costs which they may be seen to incur in terms of the support and services they require? As the paper sets out the messages that are consistently given out in our society about disability and sickness are important. We are invited to view becoming disabled with horror and pity. Disability is often deemed to be a state worse than death. This attitude is often reflected in the patients with whom I work. As they become increasingly impaired or disabled by their illnesses they may fiercely resist going out if this means they have to be in a wheelchair. They view this as embarrassing and demeaning. Yet many disabled people who look like that, go to work, pay their taxes, have families, homes, friends, go on holiday. In spite of this, as the Disabled People s Movement has strongly argued, disabled people are not awarded equal citizenship in many areas of their lives.

2 The Association went on to point out that of equal concern has to be the treatment of older people in our society. The lack of care and support for older people at the end of their lives has been well documented. The recent Health Service Ombudsman s report (February 15 th 2011) has criticized NHS staff for treating elderly people without compassion, condemning many to die in unnecessary pain, indignity and distress. Social care, which many older people need to be able to live successfully in their own homes, is not free at the point of delivery. As has also been shown older people do not have equal access to palliative care. In 2005 a report, End of Life Care commissioned by Help the Aged, showed that inequalities in palliative care mean that the opportunity to go into a hospice declines with age, as does the chance to die at home. Only 8.5% of older people who die of cancer do so in a hospice, compared with 20% of all those with cancer. Older people in nursing homes are also discriminated against in that they are far less likely to access specialist palliative care, or be admitted to a hospice. Although specialist palliative care is well developed in Great Britain, lack of access to such services is a recognized issue and is acknowledged to be based on a post code lottery. Services are generally unequally based and distributed round the country. In some areas there is very little provision and whilst most hospices and specialist palliative care services work with patients with cancer and motor neurone disease, those patients with end stage heart failure, COPD and a range of other conditions often fail to access such care. Again it has been well documented that those from minority ethnic groups, homeless people, those with drug and alcohol problems, asylum seekers and refugees and prisoners will have much more limited access to palliative care services. Coupled with these issues we are now facing a time of unprecedented cuts in the services and support for vulnerable people in our society. I meet people struggling to manage in their daily lives with lack of social support and services that do not fill the gaps. Currently, in the borough in which the majority of the patients with whom I work live, there is now no meal preparation service offered for those receiving social care whatever their condition. I am currently working with a 32 year old woman, dying of an advanced cancer, who is not well enough to cook a meal. Due to the nature of her condition she is unable to stand for any period of time. The carers are not even allowed to make a sandwich for her. It is also important to recognize that family relationships can be complicated and sometimes difficult. Currently social workers are used to having to advocate on behalf of a patient whose family may be pressurizing him/her to go into a hospice/nursing home/hospital because that is easier for the family rather than in the best interest of the patients. Often families are doing this because they are under great strain, both emotionally and financially and very occasionally because they simply no longer want to accept the burden of responsibility and care. As the Association of Palliative Care Social Workers has said Add together the intense pressure on increasingly scarce resources and coupled with a lack of access to palliative care, it is hard to resist the idea that were assisted dying to be legalized in future people may face pressure not to be here, and not to be a

3 burden on their families, particularly if they are old, poor or members of a minority group. Social workers understand that some people diagnosed with a terminal illness may initially feel that they do not want to live. However we need to look at the importance of the support offered to them at the time when they are in that position. A study, in which I was involved (Palliative Care, Social Work and Service Users, Making Life Possible), looked at service user s views of palliative care social work practice. The service users interviewed saw palliative care social work as making a unique contribution in offering them personal, social and practical support, on an individual basis at what was a very difficult time in their lives. People talked about feeling hopeless, out of control, as if they were going mad and at the end of their tether. They emphasized the crucial social, emotional and practical support the social worker had offered them which had helped them regain control, challenged feelings of despair and guilt and restored family relationships. The study did not raise the issue of suicide and assisted dying but some raised this issue themselves. One man described how the social worker seemed to him to have appeared at the end of his bed while he was in the hospice. Because of her intervention he lost the desire to commit suicide She s made me value the importance of my own life and made me feel important as an individual, which was lacking and which was very important to me, very, very important. I don t think I would be here now. Well I know I wouldn t be here I would have done something. I couldn t live like I was I felt of no value at all.. I don t think I would be here (without the social worker) There are some patients who do raise the issue of euthanasia and assisted dying and who have spoken of their desire for this. Clearly it is important never to choke off such a discussion and to allow people to express their thoughts and feelings however distressing it may be for those close to them. However it is often clear that many people mainly dread being a burden to others, particularly close family or friends. They feel that they have no more to offer but will only be causing others difficulties and pain. It is crucial that at such a time patients and their families have the support they need to know that they will not have to cope alone and that the medical, emotional, social, financial and practical backup is there whatever problems may arise. At such times as these of increasingly restricted funding for mainstream and support services, such issues loom even larger. If some form of assisted dying were to be legalized in the UK I would argue that this could have a profound impact on the role of hospices, the role of palliative care social workers, on the relationships between patients and their families and on the relationships between patients/families and health and social care services. There are also likely to be considerable resource implications If legalization were to take place then the procedures and services that were on offer would in my view, and from my experience, need to be completely separated out from hospice and palliative care services. An important issue, for those of us working in hospices, is the understanding and acknowledgement that already some people, who know little of the hospice movement, come into the hospice (or perhaps resist coming into the hospice) fearful that euthanasia is already practiced. That many people do not understand the present role of hospices was absolutely clear in the study on palliative

4 care social work I have already mentioned. A few years ago I ran a patient support group in our hospice day centre. On one occasion several patients spoke about how much support they got from the day centre but commented they would never come into the hospice in-patient unit as they did not want their end hastened. On the other side of the coin are those patients who choose never to talk about the fact they are dying. They and their families can confidently accept the support of hospice and palliative care services for themselves knowing that such a discussion will never be forced upon them. If and when they are ready they can begin to talk about what dying means to them while in the meantime they access the support they need with the myriad of problems that can arise when someone is very ill. If assisted dying was to take place in and be associated with hospices/palliative care units then their current role would be severely compromised. It is likely that a large proportion of patients would choose not to access their services and that there would not be the same relationships of trust that currently exist between service users and palliative care professionals. This lack of trust might also extend to the relationships between professionals working in hospices/palliative care. There would inevitably be divisions between those who were in favour of and those who opposed assisted dying and perhaps mutual suspicion as to whether patients were being influenced in their decisions according to what resources were or were not available. If assisted dying were to be legalized then, as I have indicated, the cost implications might be considerable. As well as the medical procedures and regulatory safeguards that would need to be in place there would also need to be the same kind of education and training for professionals and emotional, social, practical and bereavement support for patients and families that is currently offered (particularly by social workers) within current hospice and palliative care provision. This would require a range of personnel from doctors to social workers/bereavement counsellors and so on. We cannot assume it will be a cheap service to provide. How will decisions be made as to which services should be funded and provided? To conclude most of us are frightened of illness, impairment, disability and death. It s easy when we are young(er) or healthy to say I wouldn t want that for myself but when it happens people often feel differently if they have the right kind of support and services for themselves and their families. I have seen many people facing life threatening illnesses who continue to enjoy life sometimes for much longer than they thought would be possible, especially when they have access to good pain control and help with all the practical and emotional issues that arise when someone is facing a terminal illness. Even when people have to give up the things they have previously enjoyed such as leaving work they often do find new roles and purpose. However if the resources that are needed to support people are diverted away to fund an assisted dying system my concern would be that inevitably it would be that system that would come to be seen as the one that offered the easy solutions. Communities struggling in difficult economic times might well come to resent those who require long term services and resources and to feel that people should be choosing assisted dying instead of trying to impose an unfair burden on the rest. My plea would be that instead of concentrating

5 on assisted dying we should be putting that effort into fighting for high quality health and social care services to support all those at the end of their lives, their carers and their families. References The Association of Palliative Care Social Workers, (2006) Position Paper on Euthanasia and Assisted Dying Seymour, J. Witherspoon, R. Gott, M. Ross, H. and Payne, S. (2005) End of Life Care, The Policy Press in association with Help the Aged Beresford, P. Adshead, L. and Croft, S. (2007), Palliative Care, Social Work And Service Users: Making life possible, London, Jessica Kingsley.