Good Death Week blog

A Good Death in a Care Home?

In this special blog series to mark Good Death Week, Alison McPherson, Home Manager at Hillside View Care Home in Paisley, discusses what a good death can be like in a care home, and how she and her staff help people to die well...

What does dying well look like?

For many of us a good death would be to go to bed, and not wake up. A death where there is no suffering, no pain, no discomfort.

Unfortunately for many of us, this will not be the case. For many of us, chronic health conditions will result in a decline in our physical capabilities, and ultimately progress to death, over a long period of time.

Within Hillside View we work with two very different groups of people. We have younger people with little or no family contact, and we have older people who have relatives who are very involved in their care.

Very often where there are no relatives, the care team become the family members, and they then take on the role of supporting the person to the end of life. We hold funeral services within the care home, and this can lead residents to begin the process of planning their own funeral. And when they request this, we arrange for it to be recorded within the plan of care.

While discussing their funeral plan, we will have the difficult conversation of how they would like to be cared for at the end of their life. They often advise us that they don’t want to leave the care home, and this is then discussed with the General Practitioner, and the Care Home Liaison Sisters, to ensure that all possible needs are addressed and recorded to ensure that their wishes are being respected.

When a resident who has no family is close to end of life, the staff team ensure that that person is never left alone. There is always a staff member with them offering comfort and reassurance. This staff member will advise the wider care team of any pain or discomfort allowing prescribed medicines to be administered.

Often, the staff member who has the strongest relationship with the resident will be the person who will provide this comfort and reassurance.

When the resident has no family members, their memorial service is performed within the care home, allowing all staff to attend, and allowing staff to grieve for the resident and to remember their life with us.

When working with the family of a resident who is at the end of life, normally I as the care home manager will have the difficult conversation and advise them of the inevitability of the situation. At this time, they are offered the use of the family room, and they are offered the opportunity to stay over to be with their family member.

Throughout this period, staff members speak to the family members offering comfort and reassurance, allowing the family member to talk about their loved one, and reminiscing with them, allowing them to begin the grieving process.

We work with local clergy too, to ensure that the spiritual needs for the residents and the family member are addressed towards the end of life.

Dying well is having your wishes respected, having your medical needs addressed to promote comfort, to be reassured when anxious, to prevent distress, and to be allowed the opportunity to let go of this life when we are ready.

At Hillside View, we would like to think we help people to have a good death.

A Good Death in a Hospice?

In today's guest blog as part of #GoodDeathWeek, Kenny Steele, Chief Executive of Highland Hospice, talks about how organisations like his can help people to have a good death when the time comes...

What is a good death? ”I’ll tell you when I’ve experienced it” is the honest answer and since I feel reasonably hale and hearty as I write this, fingers crossed…. What I think might be a good death for me (totally unexpected and immediate) might be a terrible experience for those close to me (I think/hope!). Ever get the feeling you’re not going to get a straight answer?

What is easier to describe is what good care looks like, which can contribute to a better life before death and arguably a better experience of death for family and friends.

Describing what that best possible care would look like would be describing hospice care. There is no doubt in my mind that if you die or receive care in a hospice, you and your family will experience incredible levels of support and I know from the numbers of thank you letters and cards that we receive that families are incredibly appreciative of the work of our staff and volunteers. Often you will hear people talk about the feeling of relief, safety or sanctuary that they experience in hospice care.

So what makes hospices so special? The answer to this is complicated but I think can be summed up as:

1. It’s what we do. There are no other organisations in our community whose whole focus is on palliative and end of life care. This builds a positive culture and pride in getting it right and a huge amount of expertise amongst the team.

2. Community ownership. As a Chief Executive of a hospice I answer first to my community, before statutory bodies or regulators (although I do try to keep them happy as well!). However most of my funding and support comes from the local community which we serve. That helps to ensure that serving people remains the focus.

3. Money. We’re told it’s what makes the world go around and linked to the point above, the additional funding we receive through charitable donations is what enables us to remain entirely focussed on people’s needs and maintain a well resourced, compassionate team working in a wonderful environment.

So, is a hospice death the best death? Before we jump to that conclusion we need to consider how you end up in hospice care. The general criteria for admission to a hospice bed is that your physical and/or psychosocial symptoms are too complex to be managed in another setting. You may count yourself lucky to have a hospice bed available in such circumstances but unlucky to need a hospice bed in the first place. I therefore believe it is a false generalisation to suggest a hospice death is a better death than a death in another setting. Hospice in patient unit beds are however a highly valued and necessary resource in our community to support those with complex needs towards the end of life.

However, for me, the future of hospice does not necessarily mean more hospice care but rather the support of appropriate care toward the end of life in all settings. Highland Hospice supports some excellent care homes who we believe manage end of life care very well. They may struggle with some of the complex cases the hospice manages and their access to resources will be limited but they support their residents with great dignity and respect at the end of their lives.

I believe there is inherent compassion in our community and its various institutions towards supporting those with life shortening illness and experiencing bereavement. However for those of us not dealing with these issues on a regular basis it can be difficult to know what to do, what to say or how to offer support. This extends to the health and social care workforce as well. Everyone wants to do their best for those they are caring for and their families especially at end of life when there is only one chance to get it right. Much of the work of hospices going forward needs to be dedicated to supporting our compassionate communities so that as a society we can expect to have a good life and a good death in whichever setting is appropriate for us.

So, sorry to have swerved the question but here’s to a hale and hearty life and a society that supports you and me to experience a good death wherever that might be.

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.