There is something I’ve been dying to tell you
There is nothing more certain in life than death. We can postpone it but, as yet, mankind has not found the means of avoiding our encounter with the Grim Reaper. Sometimes in the NHS we seem to forget that fact and in all our laudable efforts to save lives we neglect the equally important task of helping people to experience a good death.
I attended a couple of weeks ago the launch of a Dying Well Community Charter in Hackney, as part of my role with the One Hackney partnership of NHS, social care and voluntary sector providers. It was a very powerful occasion which reminded me of how fundamental these issues are but also how attention to the things which matter in ensuring a good death might also help us improve more generally the quality of care we provide.
Dealing with death has an emotional and psychological side and a practical one. As society we have become increasingly diffident about discussing it as an issue, in part because of the decline of organised religion, in part because we are less familiar with it, having managed, as with many aspects of real life, to banish it from our everyday consciousness.
I remember vividly my first experience of death. My grandfather died in 1972 when I was 9. He did n’t have a great death, dying alone and badly disabled on a long stay ward in a Birmingham Hospital 6 months after having a stroke. NHS rules at the time didn’t allow any visitors under the age 14 so I hadn’t seen my grandfather since he had been in hospital, despite going every week with parents only to have to sit in the car park while they visited him.
I also remember seeing him after he died, in his coffin on the morning of his funeral. He looked very peaceful, the cares of old age and illness lifted and almost seeming younger than at any time I had known him. Quite clearly he was no longer there but the chance to see his earthly remains once more helped me in coming to terms with his passing.
Talking about death is not easy and it’s often easier not to do to so. Health professionals spend a significant amount of time with patients at the end of life but as many good clinicians will admit their view of end of life care has often been focused on those individuals with a diagnosis of cancer. Even there it can be difficult to speak to patients and families directly about death.
In previous ages, and to some extent in our own, death has been the preserve of religion. My late father-in-law was a clergyman and I was struck, in talking about his work, how much of it had to do with supporting individuals and families facing terminal illness or death itself. A thoughtful and sensitive man and with a deep empathy, drawn in part from his own experience of losing his mother at the age of 7, he was very skilled indeed at the task.
We cannot expect health professionals to take the place of the religion but it is one of those areas where the work of clinicians would be enhanced by broadening the basis of their training with more focus on learning the softer more empathetic skills which help them manage the difficult situations which are so linked with illness, suffering and the provision of care.
If clinicians can have the conversation with individuals and their family members about how they might want to die and how they might want to be cared for at the end of life they can then be in a position to plan what might be possible to meet those wishes. With the right services much can be done in many circumstances to allow someone to die at home.
I would stress the right services. Dying well doesn’t necessarily require the NHS to do more but it requires clinicians and services to the right things. A well informed understanding of the dying process which is shared by patients, families and practitioners can prevent many needless and distressing hospital admissions where an inevitable stage in the process of decline is treated as a crisis with hospital admission as the default position. The warning from the USA where around 20% of healthcare costs are spent in the last year of life should show the dangers of letting this phenomenon go unchecked.
As we are exploring in Hackney strengthened specialist palliative care in the community, the availability of night sitting services as well as a generally better co-ordinated system of out of hospital care, including psychological support, should be available to provide a better quality and more cost effective alternative.
There are practical aspects of death as well as dying. It was deeply shocking at the seminar to hear about the problems of some families and individuals being able to access an affordable funeral or the insensitivity of a housing provider cancelling a tenancy immediately on an individual’s death despite it being shared by a spouse or partner. I believe it is more than possible for Government and local authorities to do things to address these issues. Information also matters as, until it happens, very few people know what needs to be done when someone dies.
There is an individual responsibility though too. It is hard to think about one’s own mortality but it is very important that we do so. In our age what constitutes a good death will be less driven than in the past by cultural norms, important thought these will be for many and crucial as they will be for those seeking to plan services.
So to finish here are some of my own thoughts on a good death.
I am grateful to have passed my half century in good health. I cannot assume that that will continue and life is something I have to accept cannot be taken for granted. My responsibility is to make the most of the life I have, not to expect its indefinite extension.
If I have a life threatening condition I would like to know as clearly as possible the likely prognosis.
As I get older my expectations of the balance between the costs and benefits of treatment should change.
Comfort and quality of life would matter. I’d strongly want to spend as much on my “last year of life” at home.
The time I had with my family and close friends would be paramount. There is a responsibility for me, at the appropriate time, to prepare the way to make my dying as reasonable and unfrightening a process as it can be for them.
If I get the chance I should make sure all my affairs are in good order.
I’d want a good funeral (the odd Welsh hymn) and a glass raised to mark my passing.
Inevitably it may all be very different but I am convinced that openness about death at both individual and societal levels are crucial priorities for us to address if we are to give the greatest number of us the chance of a good death. For as the Greek historian Herodotus commented we should consider no man happy until his end is known.