good life, good death, good grief

Good Death Week blog

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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