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Love and laughter to the endCreated by Verity in Being You, Retirement
This article is the third in a series taken from The Guide to Later Life – published by McCarthy & Stone, ampoule Britain’s leading builder of retirement housing. The Guide aims to help more people and their families to open up and start tackling those ‘challenging conversations’. It includes contributions from a pool of experts, as well as people who have a personal experience of the issues themselves.
Dr Michael Blackmore has spent decades helping people live as well as possible right to the end of their lives. He explains how dying can be a gentle, peaceful passing. Dr Michael Blackmore has 30 years’ experience as an NHS GP. He was a senior partner at a practice in the South West of England and has chaired a number of local health authority committees.
When I arrived at St Christopher’s Hospice in south London, I was pretty nervous as I had no experience of working with patients who were close to dying. Yet I quickly discovered that St Christopher’s was the happiest ‘hospital’ I have ever known. I was lucky enough to train with Dame Cicely Saunders, an icon of terminal care — some say she invented it — and the experience was invaluable and humbling. It taught me that I would have another chance to do better but you wouldn’t. My job was not to help you die but to help you live as well as you could until the end came. If we got this right between us, dying would be as natural as possible.
The first thing I learned was that once you have talked about dying with someone, you don’t really need to worry about it anymore and, if you got it right, neither do they. Few people are afraid of death, but many of us fear the process. We all need reassurance that it will be a gentle and peaceful event. I always tried to dispel their fears quickly.
End of life care is mostly about paying careful attention to a few quite simple problems. Comfort, both physical and mental, and dignity are top of the list. This means precise attention to things like constipation (highly likely when the patient is taking strong painkillers), the height of the bed, and things like special aids such as waterproof sheets. Good pain control means balancing the need to be as lucid as possible with acceptable comfort. The dose is what works. Frequent doses of fast-acting, usually liquid preparations will quickly achieve reasonable comfort.
Reconciling the needs of the patient and their family can sometimes be challenging. Who should be told what and who decides? Families may need to be guided and supported to help them understand that the patient nearly always ‘knows’, to conceal the truth rarely helps. I always tried to remember who was in charge — the patient, if awake and lucid. Sometimes a dying person can stay awake and be able to talk until almost the final moments, but this is unusual rather than the norm, so it’s important that everyone says the things that they want to at an early stage. Sharing the truth and your fears and feelings will help you face the future together. It’s normal to have feelings of sadness, anger, frustration and loneliness — as well as lighter moments of happiness and laughter.
Early contact with Macmillan Units or the hospice, where these are available, is helpful as well as discussing where you would like to die. This helps to reduce anxiety about the future, and lets you get to know the staff if you opt for hospice care in the last days or weeks. Usually, all necessary care can be provided at home if that is what you wish. Extra nursing can frequently be provided by Marie Curie nurses who will sit with you all night if needed to give families essential rest. Ask your doctor for a DS1500 form (Attendance Allowance or Disabled Living Allowance if you are under 65) to help with care needs or maybe to rent a special piece of equipment (such as an air mattress,wheelchair or bath lift). These may also be available from your local Social Services department. Make sure that you have plenty of painkillers before weekends or public holidays as it may not be easy to get these from deputising services if you run out.
As people come closer to death, they get weaker and won’t be able to get out of bed; sleep becomes deeper and patients often drift in and out of consciousness and experience confusion. Although patients may not respond, those close by should keep talking. Hearing may be the last sense to go, and the perception of someone near is comforting. A carefully managed combination of drugs and attention to small comforts (such as mouth care, smooth sheets and regular changing of pads) will do much to ensure that the last moments of life are peaceful.
End of life care is not easy for anybody — doctors, patients or families. You may laugh, you will probably cry; maybe together, maybe on your own. I always had great admiration for those patients who entrusted their last days to me. I would ask myself, ‘Would I have coped as well?’ Usually I answered, ‘Probably not.’