good life, good death, good grief

Good Death Week blog

The following blog posts were written by guest writers as part of Good Death Week 2018.

A Good Death in Hospital?

Purposeful, positive and powerful – a role for hospitals in providing end of life care

In this special blog to mark #GoodDeathWeek, Dr Deans Buchanan, Consultant in Palliative Medicine, NHS Tayside, questions the assumption some people have that hospital is a “bad” place to die…

Do I want to die in hospital?

The honest answer is, “no, not really”. It’s the same answer many people give. Surveys show as many as 70% of people would prefer to die at home.

But... I don’t think physical location is my top priority at the end of life and the reality is that I do have a higher chance of dying in hospital than being in any other setting at the end of my life. I’m not alone in this. When those who are facing serious or life threatening illness are asked about their priorities then: dignity, respect, comfort, being involved in decisions, personhood, feeling safe and environment are all prominent compared to location itself.

It is also true to say that my ability to “choose” where I die may be influenced by a whole host of factors beyond my control. I may be working through situations and considering options about things that I would never have chosen at all. That's why responses to the question “where would you want to be when you die?” alter according to whether those asked are healthy and answering hypothetically or living with advanced illness. Preferences about location can also change over the course of illness.

Hospitals serve the communities they are located in. Suffering, healing, human moments in the midst of mortal striving have always been part of the hospital landscape:

“A hospital is only a building until you hear the slate hooves of dreams galloping on its roof. You listen then and know that here is no mere pile of stone and precisely cut timber but an inner space full of pain and relief. Such a place invites mankind to heroism.”

Richard Selzer – Taking The World In For Repairs, 1987

Quality of mortality is part of the core business of health and social care. Care from “cradle to grave” was envisaged from the outset of the NHS and we know that in Scotland, on any given day, approximately 10% of those who are admitted to hospital as an emergency will not go home but will live their last days there. We also know that uncertainty in modern illnesses underpins the need for a reactive component to care. Even as we try to plan ahead for our last days, months and years we do so without really knowing what that will entail. Death planning has the same potential for change as birth planning does...

Given these realities, then, what positive and purposeful planning is there to support our hospitals in providing end of life care? There is an evident gap when it comes to this.

When healthy people are asked where they would like to die, home is top of the list, hospice is next, then hospital, and last of all, care homes. Yet, the trend in the UK is moving away from death in hospital towards death in a care home setting, in the context of a policy that emphasises choice. To me, this dissonance between reality and policy is hard to follow. When hospital avoidance seems more important than the actual life experience of those dying then these dissonant notes can end up be played out in the very place care and refuge has been sought.

“Hospital” derives from the same Latin root as hospice and hospitality - hospes - originally meaning “stranger” or “guest” and “patient” from the word patior meaning “to suffer”. Hospitals were first described as places where strangers who suffer could be welcomed.

An approach that focuses on avoiding hospital and that considers admissions near the end of life as inappropriate moves us away from the original purpose of a hospital. It makes those who would choose hospital, those for whom community care reaches a limit, or those who have illnesses unfolding with uncertainty become unwelcome strangers who suffer. It under-serves the care and compassion that those working in hospitals demonstrate day in and day out in Scotland when looking after those living their last days in hospital.

Are hospitals perfect? – No. Can a death in hospital be “good”? - Yes. The Scottish Care Opinion data shows this to be true, as do my own experiences working in acute palliative care, and the research backs it up. The Office for National Statistics Voices report describes that almost three-quarters (74%) of respondents whose relative died in hospital believed that their relative died in the “right” place.

The components of a good death in hospital look remarkably similar to a concept of “home” that isn’t tethered to the bricks and mortar of a “house”. It is at its most powerful when it is purposeful, positive and person-centred. When staff recognise there is one chance to get it right and focus is sharpened to attend to need, then a death in hospital can be as “good” as a death in any other setting.

This view does not undermine the efforts to improve end of life experience outside of hospitals. An effective hospital admission near the end of life may be the very action required to allow someone to achieve a wish to be at home in their last months, weeks or days. They should act in concert not competition.

We have a great opportunity in Scotland to stand out and to lead on this. We have a chance to recognise that hospitals are also just buildings where people live, work, die, laugh, love, cry, relate, face uncertainty, find community, sink under and rise above. In short, hospitals are part of human communities and can have a positive, purposeful and powerful role to play to help us all “end well”.

A Good Death At Home? The Work of a Doula

In the first of our special guest blog posts for #GoodDeathWeek, Hilary Peppiette considers whether her mother's death at home was a "good death" and how it informs her current work as a death doula.

My mum died nearly 4 years ago at the age of 82. She had been diagnosed with bowel cancer 18 months previously, had surgery twice, but opted not to have chemotherapy. She wanted to be at home with my dad, her husband of nearly 55 years, and to carry on living life as normal until she died. Mum did exactly that and died in her own bed. In her last 3 weeks, my dad, my sister and I took turns being with her, sitting beside her bed, sharing stories and memories even after she was no longer conscious. I learned that dying can take a long time, even after nutrition and hydration have stopped. I think Mum had a good death, but could it have been better?

After she died, her body was washed and dressed by the wonderful community nurses, and collected, very respectfully, by the funeral directors, within a couple of hours. Whilst we were given the opportunity to say our goodbyes, we were quietly but firmly ushered out of the room whilst the professionals did their jobs, and there was a sense that the wheels had been set in motion and we no longer had any say. This was just how it was done.

As a family, and with the complete collusion of the health professionals involved, we never mentioned the words ’cancer’, ‘terminal’, ‘death’ or ‘dying’. ‘Palliative care’ was mentioned once when a gentle volunteer came to visit Mum in hospital and gave her a lavender-scented hand massage which Mum loved, but never again. Looking back, I am really sad that I wasn’t brave enough to talk to Mum about it all – how it felt, what her biggest fears were, what she wanted and didn’t want, what mattered to her about her own death.

I guess we were guided by Mum and her seeming wish not to acknowledge what was happening to her. ‘If you can’t defy it, deny it’ – is that what was going on for her? I don’t know. As a family, we had never talked about anything emotional, difficult or messy, and we were afraid to upset Mum and risk making things worse. So we just didn’t talk about her disease, her prognosis, or her wishes for her dying, her death, or her funeral. She did have a Will and a Power of Attorney, put in place years before she first showed symptoms, but no Advance Directive or Anticipatory Care Plan or Statement of Wishes, and certainly no conversation about it all.

I began my training as an end-of life doula two years ago, with Living Well Dying Well. A doula is a companion who supports a dying person to have the best possible quality of life right up to the moment of death, and to have the best death possible. We often work with a dying person and his or her family from the time of a life-limiting diagnosis until after death, but sometimes just for the last few weeks or even days. The essence of a doula is simply compassionate presence, but we also have a whole kit bag full of practical support we can offer, in someone’s own home, or in a care home, hospital, or hospice. Doulas help dying people take ownership of the ends of their lives, empower them, and offer unconditional loving support. We work alongside the medical and other professional involved, take on practical tasks, personal care, offer emotional and spiritual support, hold space for conversations which may be difficult. After a death, we can help to care for the body, support friends and family to look after the body at home perhaps until the funeral, help arrange the funeral, and offer assistance with anything at all that needs to be done. We try to be the sand in the jar, filling in any gaps, and attuned to whatever is required.

Living Well Dying Well provides comprehensive training for doulas. It also works in communities through workshops, festivals, seminars, death cafes, social media and regular newsletters to inform and empower people to exercise choice and control around their own deaths and dying. People need to talk about these things. I wish my family had talked about it with my Mum.

My first doula client, Peter, died in October. I had been introduced to Peter and his family 12 weeks prior, at the point in his life when he had decided not to have any more treatment for his cancer. He was 87 and had lived with his disease and the effects of several rounds of chemotherapy for a long time. Now he simply wanted to take control of his least few months, and put things in order for himself and his family, particularly his wife of 55 years, Mary, also 87.

I visited Peter and Mary twice a week, for 2 or 3 hours each time, gradually getting to know them, their family, and wider support network. Initially, the family wanted me, as a doula, to be involved to provide emotional and spiritual support, help facilitate conversations about Peter’s imminent death, and to give each of them an opportunity to talk about their wishes, fears and unfinished business. It felt more like a counselling role than anything else, and I worried at first that I wasn’t really ‘doing’ anything very much. I had to remind myself that it was enough just to ‘be’ there, to tune in to whatever was needed, and to keep it simple. As the weeks passed, I met all of Peter and Mary’s children and grandchildren, other family members, their priest, carers, doctor and dentist. I became part of the support network and found myself very much part of this lovely family, all of us striving to give Peter the death he wanted.

I sat with each of Peter and Mary, listened to them articulate their worries, took each of them out for tiny, short walks in the sunshine when they wanted fresh air, washed dishes, hung out washing, made meals, shaved Peter and cut his nails, fed him when he was no longer able, read to him, visited Mary in hospital when she had a minor stroke, helped her rehabilitate when she came home, helped coordinate visits from carers, and assisted with a visit to see the local hospice. Each visit was different, but always a quiet tuning-in to whatever was needed that day.

I wasn’t with Peter when he died. He died during the night, having thanked Mary the day before for his life with her. I went to his funeral; it was a very good one, planned by him and his family. I still visit Mary once a week to support her in her grieving process, and to provide the continuity, reassurance and companionship that Peter so wanted her to have. I have learned so much from working with this lovely, loving family.

Being a doula has a wonder and yet an ordinariness about it. We are all going to die, so let’s help each other to do it as well as we can.

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Before I die I want to ...
Bereavement Charter for Scotland
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