Yesterday I sat with my friend of 30 years in her garden, marvelling at the beauty of a deep royal red geranium. She has an artist’s understanding of colours and hues, and in recent years had done some intricate drawings and artistic explorations of the weeds on her property. I commented that her garden was a wonderful healing environment and she said that when she had recently returned from hospital her heart had lifted as soon as she came through the gate. Our environment is important to healing; healing into living, but also healing into dying. Just as we create homes to nurture us in life, so that same home may support us into death.
My friend had experienced a rapid and shocking illness leading to a massive infection, intensive care and there had been concern whether or not she would ever come home, but now here she was on her own verandah. A home where the magpies sing, the garden flourishes and the house is filled with her and her husband’s paintings, and an eclectic collection of ‘this’s and ‘that’s each telling its own story. Home where her “soon to deliver” youngest daughter lives next door and her artist daughter and granddaughter live down the hill. Home where neighbours drop by to play scrabble or bring home grown eggs. Home where simply to walk through the door for her felt uplifting and safe. She told me that when the time came – however long in the future that might be – she would like, if possible, to die at home.
For my friend, the fact that she survived at all is testament to the medical care she received, and she is grateful she did not die and did not die in hospital, and now is back here at home to welcome a new grandchild and all the joy that brings.
Most people would like to die at home
A survey(1) recently published by the Australian Government Productivity Commission (July 2017) acknowledged that while over 70% of Australians would choose to die at home surrounded by family and friends, in only 10% of cases does this happen, few having access to the care that would have supported their wishes. Many end up in hospital and despite the increasing use of health care directives, if these are not available and or fail to give clear directions, they may receive care inappropriate to their end of life wishes and die in a way and a place that does not reflect their personal choices. Fifty years ago, dying at home was normal; today a majority of people die in nursing homes and hospitals, often in intensive care.
A doctor’s gift
As a doctor, it is beautiful final gift we can give to our patients; supporting them, if it is possible, to die at home. I have found that kind of caring to be very special for me too, once again privileged to be part of an intimacy few others experience. In the environment of their home with the right support, patients may feel they have a greater sense of safety and a larger degree of autonomy. Certainly they have more choices about how they will live until they die. For some of my patients, this has been choosing a more nutritious diet that suits them better than hospital food, choosing times of rest that better suit their own rhythms, choosing carers who know them personally and care about them deeply, and even for some, making choices that perhaps would not be approved of by their medical practitioners, but which allow them to enjoy life until the end. For the family and carers performing these final tasks there is a healing which helps them in their grieving. For the doctor, our parting role, signing the death certificate, allows a final private goodbye and a time to share with those who are left behind.
I remember going into a home where a teenager had died too soon; his whole family had slept with him on his last night, some on the bed, some under the bed and the love in that room was palpable. I remember helping and observing the tenderness of two teenage daughters bathing and dressing their mother after her death. I remember a baby held in his mother’s arms in their big bed, a special time of grieving for his immediate family before their many close friends and relatives arrived, a special time before his little body was taken.
I remember visiting homes where not only the relatives were acting as carers but a whole community team, in some cases a Buddhist caring group, in another a community of friends who called themselves the Care Bears. In another, members of an Al-Anon fellowship who had met regularly for years and had a close bond with each other, some cleaned, some cooked, some nursed, some read. In our society where many people have never seen a dead body or been through the process of supporting someone they care for about to die, we have almost sterilised death, divorced it from life, the rhythm and rituals that are life and death are lost and death becomes more fearful. By involving family, friends and community in the home care of the dying, a healing takes place for everyone.
Investing in home based palliative care
If we are to support people to die at home, investment needs to be made to ensure doctors, community palliative care nurses and families are fully and effectively supported. We need to have fully funded and effective palliative care services available to everyone, whatever their financial and geographic situation. As well as offering training for professional health-care providers, community carers themselves should be offered training and support. Research into efficacious palliative care should be given priority.
I hope there will come a time when we can honestly say: “While you may worry about death itself, we are able to treat and control the symptoms experienced in dying.” Today these symptoms are feared more than death itself. It may be said that this training will be costly, but in fact this investment will in the end be cost saving, as it costs far less to care for someone in their own home than in a nursing home, hospice or hospital. When dying at home is simply not a possibility, we should strive to create environments that are in themselves healing for the patient and their carers.
There is currently a great gap between how we would choose to die and what is actually happening. And closing that gap would be not only cost-effective, it would be healing for patients, their carers, and the community. Deaths in hospital can be frightening, isolating and cold, ill preparing us for whatever is to come. Deaths at home have the potential to be very warm, intimate and beautiful, leaving those who are left behind with a sense of completion and a knowing that they have given all that was lovingly possible. This is so as much for the doctor as it is for the patient and their family.
Beautiful Jane. You are a precious gift to your community and friends. Dx
Very beautiful article Dr Jane.
It is the love and loving care that truly matters most when dying, yes we absolutely need the medical attention, but how it is delivered is the key.
When one is close to death, the fact that love is all that really matters becomes very evident and that which is not is often deeply painful to see and feel.
Very lovely to read your words Jane and feel the warmth and love in them. Having worked in palliative care in the community myself, the beauty of the empowerment both the patient and their family get to experience, and the freedom to work through, the dying process in their own unique way with the support required, not only from their nurses and doctor but their own community is a very healing experience for all. The choice to die at home as most dying patients want, being supported to live as fully as is possible embraced in the love of those near and dear to the end and beyond is a natural one and a move towards accomplishing this is a move in the right direction.
Thank you for this beautiful article. It reminds me that there is a beautiful way to die, but sometimes it is feared and medicalised to the point where the individual and their family are left disempowered and angry at a time where love, support and compassion is what is needed.
Further training would open the doors for more freedom of choice when it is needed most.
I totally agree Jane, most people want to die at home and if possible who better to support them than their family and friends. “By involving family, friends and community in the home care of the dying, a healing takes place for everyone.”
There is a deep honouring you offer Dr Jane of the fragility felt at the end of life – everyone feels fragile. However what is really supportive in your sharing is that we don’t have to feel helpless and powerless.