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Palliative care - a real choice

to live and die with dignity

Jill Lovell

Open Door - November 2009 pages 10-11

fork in a road passing through an autumnal wood picture: (cc) Bruno Monginoux - www.landscape-photo.net

An elderly lady who is severely disabled from her MS symptoms is about to be discharged from a geriatric ward. She is looking forward to a holiday in Zurich with her son. "Oh, that's a lovely city", says her doctor. "You'll enjoy yourself there!"

This vignette is from the comedy series Getting On, shown on BBC 4 earlier this year. Going to Switzerland has become a euphemism for assisted suicide. Of course it is not a laughing matter but the use of satire is a reminder of the unease we feel about this subject. Arguments exist both for and against it. There are vulnerable people who need to be protected and those who prefer not to choose when to end their lives as well as those who do. I hope this article will contribute to the debate amongst people with MS about the provision of compassionate care offered to us - from the time of diagnosis, through the progression of the illness, to end of life care - rather than the means of ending of life itself.

The beginning of a journey

The diagnosis of MS marks the beginning of a journey of uncertainty. It's hard to tell how it will affect each individual. Initially, there is a sort of denial - "Yes, I have MS, but it can be treated and I will overcome it." Positive thinking is, of course, always good. There are disease modifying drugs for some, alternative therapies for others, a mix of both these things - and more - for others. You have to deal with the present and try not to look too far ahead because it is impossible to predict the way MS is going to affect you. What is the point of imagining yourself using a wheelchair before you need to, or perhaps never have to? Or trying to work out how many years of a reasonable quality of life you have left? Carpe diem!

It's clearly important to find the cure for MS. But, I would argue, not at the expense of providing good palliative care. Cari Loder was one who thought she'd found a cure in 1994. But when her MS progressed and her symptoms became more disabling, she could not see a future for herself being dependent on others for her daily needs. She took her own life earlier this year whilst she was still able to do so.

Every one of us will inevitably worry about what the end stage of MS will be like. Debbie Purdy, who has primary progressive MS, wanted to know that her husband would not face prosecution and a possible 14 year sentence if he were to help her travel to the Dignitas clinic in Zurich. When the Law Lords agreed that the law needs to be made clearer, Ms Purdy expressed the relief that she would now be able to get on with her life. Is it possible that if Cari Loder had known this too, she might have felt more confident about her own prospects and might not have felt the need to end her life so soon?

Living with dignity

Being positive is obviously important. But when hope of a cure runs out, what then? The focus need not be on the ending of life. For those of us whose MS progresses a healthy response to an uncertain prognosis requires an element of realism. Moving from denial through despair and then to an acceptance of being chronically ill (or disabled) is tough. But here we have the experience and success of the disability lobby to help us out. One campaign, 'Living with Dignity', is headed by Baroness Jane Campbell. Disabled since birth, she has campaigned with others to challenge stereotypes that label the lives of people who have disabilities as worthless because they are not 'normal'. There is no shame in counting ourselves amongst the ranks of those who are 'disabled'. We can't be cured but we do have the right to live with dignity. Care and support, yes, with everything possible being done to promote independent living, both at home and in places as good as hotels for respite breaks.

When you have been 'able' you suddenly become acutely aware of how society discriminates against the 'dis-abled'. Even with the Disability Discrimination Act (DDA) and successes in removing barriers that prevent us from being able to take a full and active part in society, there is still a stigma around being disabled. It's not just about ramps and disabled loos, it's also about people's attitudes. Part of the problem lies in the willingness of society to be bothered about enabling people with disabilities to live normal lives within the limits of their abilities. And this is the real worry.

End of life care

Even though it's encouraging that the NHS is driving through its End of Life Care (EoLC) strategy at the moment and the government is trying to sort out the muddle that has become social care, there are still some concerns. EoLC promises to deliver the best palliative care to people who have a year or less to live. That's a tough call. When do you know that you have a year or less to live?

So, what is the difference between palliative care and EoLC? That is the question I haven't been able to get an answer to. The World Health Organisation definition of palliative care includes the following aspirations:

  • to offer a support system to help patients live as actively as possible until death
  • to enhance quality of life and may also positively influence the course of illness
  • to be applicable early in the course of illness, in conjunction with other therapies and investigations
  • to offer a support system to help the family cope during the patient's illness and in their own bereavement

Both have the same aspirations but EoLC comes under the umbrella of health care and the wider issues of palliative care do not.

There is much that can be done to help us live with dignity. I don't think any of us wants to die before we need to. What affects us all when we have to weigh up the options is the sense of whether we are worth the cost in financial and emotional terms, to ourselves and those who love us. I do worry that focussing our attention on the way we end our lives will keep the spotlight away from our human right to live with dignity as well. Is it too much to ask for a real choice?

Jill and Colin Lovell
Jill Lovell can't believe she's now 52 with two grown up children. Her first MS symptoms appeared in 1982. Relapsing remitting MS became secondary progressive in 1998 and she now uses a wheelchair full time. She had to give up nursing in 1991 and finally gave up paid employment in 1999. She lives in Gillingham, Kent, with her husband Colin, where they are both involved in their local church, Jill as a Reader.

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