The Dignity of Dying
It has always been my understanding that death happens to all of us, we rarely have a choice in it, and we seldom know when it will happen. It is, as they say, as guaranteed as taxes. Except chances of having a conversation with the Inland revenue about your tax code is as likely as the grim reaper turning up at your door to offer you a rebate.
As an ANP, and before that, a qualified District Nurse, death is a conversation that oftentimes has to be encouraged, for those who are reaching what we call in the job “end-of-life”. Many patients, of varying ages (cancer is not ageist) required care within their own homes, and my job has always involved provision of this care in one capacity or another. As the decades have passed, I have changed from administrating end of life medication, to prescribing and authorization, such is the power of a master’s level education, thank you Hull university!
What has always been the most important part of my role with patients when participating in nursing them at the end of their life, is the therapeutic connection I develop and build with their families and themselves. Dying can be violent and sudden, peaceful and expected, or long, painful and lonely and I have always been committed to enabling patients to feel safe when they are facing the near end of their lives.
There are clinical signs, symptoms and diagnoses, which predict the patients for whom we might need to start planning end of life care, and often this process includes a multidisciplinary approach; nurses, palliative care specialist, doctors, carers and ANPs like myself. Often, but not always, there is a history of cancer, which has been unsuccessfully treated, and any secondary care interventions have been carried out and exhausted. Patients are often then provided with palliative care, which means that priority becomes the quality of life, the management of symptoms and the provision of care where that patient wants.
Today was like any other busy clinical list, a morning full of minor illnesses, reviews, pathology reporting, medication reviews. But my afternoon up until I returned to clinic to continue my on-call list, was to visit a 94-year-old lady and her family. The purpose of this visit was to have a conversation about dying. Now that takes all the fun out of my visit! But I needed to sit with the patient and ask some really difficult questions, about how she felt about death, where she thought she might want her care to be when that time arrives.
Obviously, I drew on all my previous work with palliative care, and it was an advantage that I could share decades of experience with her, because it demonstrated that I had a wealth of understanding, essential for the level of intimacy that the subject demanded. I had multiple conversations with the family and patient prior to this visit, to gently prepare them for a conversation which people rarely like to think about; dying; death.
I remember a male patient, 13 years ago, living with his wife and family close by, who was facing the end of life and was on my case load (back when I was a District Nurse and had my own geography of patients). I remember it so clearly because I was pregnant with my second child, and will never forget, he passed away before the birth, but he predicted I would have a boy. Anyway, I remember paying weekly visits for a year before he reached the end of life. The reason for this was that I always like to work proactively, I still do, but the context of my job is different, so I can’t always ring patients a year before they have a fungal skin infection, or an ingrowing toenail!
As I built up a rapport each week, I got to know him, his values, beliefs, his personality, and I also built a familiarity of all his family members as the months passed, and different people would be visiting him. At first the man was fully mobile, able to get about, indoors and out, and had no specific needs. But I had “the conversation” with him when there was no sign of crisis. He had a confirmed diagnosis, of a cancer that was incurable, and the prognosis was that he would not survive it and that he would be provided with the necessary symptom management and social support as needed. So, I took advantage of the relationship that I had built up with his wife and him, and felt confident to talk about dying, and what he felt about it. I asked him what his fears were, and where he would like to be when that time came.
As you can imagine, this level of emotional intimacy cannot be rushed, and you cannot expect an honest and natural interaction if the patient doesn’t trust or understand you. This was why I invested time every week without fail, to visit him, oftentimes just to talk about the weather, or some new bulbs he had planted in the garden. But what was being cultivated, and developing was a beautiful and therapeutic relationship which enabled the patient to share his fears, what his expectations were, how he felt about the idea of death and how his family were handling his diagnosis.
Over the year that he was under my care, I saw the slow decline, the changes, that were inevitable, loss of weight, increase in fatigue, and increased frailty. The family had prepared, and in doing so, minimized any fear or shock at his decline. There was a quiet acceptance but with this came a sense of empowerment that they were able to care and adapt to every change. He eventually lost his mobility, due to a combination of malnutrition, dehydration, and loss of muscle mass. I had already prepared for the delivery of a hospital bed, some weeks before all the deterioration.
By the time the family and I reached the point where he had to be cared for in bed, I had already performed the necessary risk assessment for his pressure area care, his nutritional and hydration needs, his pain management, and the requirements for moving and handling. As soon as he was unable to take his medication orally, I had all the necessary medication in injectable form, kept in a safe place, ready to administer when needed.
There is nothing more heartwarming than walking into the calm that surrounds your patient and family at a time where grief and uncertainty can often overwhelm all involved. The knowledge that you have meticulously planned the care, involved the family, and ensured that the experience was free from stress, crisis, and pain. One morning, I was visiting to renew his medication, which by that point, was being delivered via what’s called a syringe driver, a small mobile gadget that feeds medication through a tiny tube sitting just under the skin. He laid, eyes half open, just about able to string a couple of words together. As I held his hand, feeling the coolness, the gradual shutting down of his circulation, he said to me:
“you’re having a boy”.
His wife was standing over my shoulder, watching as I renewed his syringe of medication. As he drifted off again, into a calm blanket of sleep, I smiled to her, and she smiled back, tears watering her eyes. We both knew he wouldn’t be here by the time I would find out; I hadn’t even had my 20-week scan. But he was right! I later found out, when the sonographer asked if I wanted to know the gender. I said yes of course! Nosey and inquisitive as ever. Or perhaps, organized, wanting to prepare, leading up to the birth, for names, clothes, decorations, just as I had planned for my patient, all his needs leading up to this moment.
While I was preparing the way for a new life, I was also playing a part in facilitating the end of another. Birth and death and everything in between is all that we have. It makes up what it means to experience this thing called life! The beginning can most times be a celebration, lots of happy tears, announcements, balloons, where the end can seem frightening, painful, isolating, and permanent. I am so proud that I have been able to help so many patients reach their end of life with such grace and dignity. I have witnessed the presence of death, and I have whispered soothing words to each patient, holding their hand as they take their last breath and make their final journey.
If you or your family or anyone close to you requires any support, please reach out to your local NHS GP, to explore what services are available within the community and secondary care, if you have any questions about palliative care, your GP can signpost you to local Macmillan services.
