End of life care is one of those subjects most families don’t want to think about until they have to. We understand. But the families who plan for it, who talk about it, who write things down while their parent can still tell them what they want — those are the families who, when the time comes, feel some measure of peace. The families who avoid the conversation are the families who, six weeks after the death, are still tormented by “I wonder if she’d have wanted that.” This guide is meant to help you start.
Let’s begin with what end of life care actually is. It’s the care someone receives when they’re approaching the end of their life — usually defined as the last twelve months, though in practice it’s often the last few weeks or days. It includes managing pain and other symptoms, supporting psychological and spiritual needs, planning where the person wants to die, and supporting the family through the death and the bereavement that follows. It’s not just “giving up.” It’s an active, skilled form of care.
Most people, when asked, say they’d prefer to die at home. The reality is that around half of all deaths happen in hospital, even when people would have preferred otherwise. This is one of the biggest gaps between what families want and what actually happens. The reason is usually that no one had the conversation in time, no plan was in place, and when the crisis hit, the default was an ambulance to A&E. A good nursing home like Aldridge Court is set up to be a third option — not as good as home, perhaps, but much better than a hospital corridor.
We provide end of life care at Aldridge Court Nursing Home. Most of our residents who die, die with us. We work closely with the local district nurses, with the GP practice, and with St Giles Hospice. We have nurses on shift 24 hours a day. We can give injections, manage syringe drivers, deal with secretions, manage breathlessness, manage agitation. We can do this in your relative’s own room, with their own things around them, with family present at all hours, in a setting that feels like home.
What does a good end of life care plan look like? It starts with a conversation. We have these conversations — sometimes early in a resident’s stay, sometimes when their health starts to deteriorate, sometimes urgently when the situation has changed quickly. We ask about preferences. Where would they want to be cared for at the end? Would they want to be transferred to hospital if they got seriously unwell, or would they prefer to be kept comfortable here? What are their religious or spiritual practices? Who do they want present? Is there anyone they don’t want present? Are there particular pieces of music, prayers, readings they’d want? These are not morbid conversations. They are practical ones.
Advance Care Planning is a formal version of this. The most common documents are an Advance Statement (which records preferences but isn’t legally binding) and an Advance Decision to Refuse Treatment (which is legally binding under the Mental Capacity Act). If your relative has strong views about specific treatments — for example, that they wouldn’t want CPR, or wouldn’t want artificial nutrition, or wouldn’t want to be ventilated — these views need to be recorded properly. We can help with this. Your GP can help. Your solicitor can help.
ReSPECT — Recommended Summary Plan for Emergency Care and Treatment — is a relatively new document used widely in our area. It’s a single form that records what someone would want, and wouldn’t want, in an emergency. It travels with the patient — from home to nursing home to hospital and back — so that whoever is making decisions in a crisis knows what was agreed in calmer times. Every resident at Aldridge Court should have a ReSPECT form if they want one. We help families through the process.
DNACPR — Do Not Attempt Cardiopulmonary Resuscitation — is a specific decision about whether CPR should be attempted if the heart stops. It’s a clinical decision, made by a doctor, ideally in consultation with the patient and the family. CPR in frail older people is not the dramatic life-saving event you see on television. The actual outcomes are poor — survival rates are low, and the process itself often leaves people with broken ribs and significant trauma without restoring meaningful function. A DNACPR decision is not “giving up.” It’s a recognition that CPR wouldn’t help.
What about pain management? This is one of the things families worry about most, and one of the things we’re best at. End of life pain in older people is well understood and well managed. We use a stepped approach — paracetamol, then mild opioids, then stronger ones. We use anti-emetics for nausea. We use sedatives if agitation becomes severe. We can use syringe drivers if oral medication isn’t possible. The aim is to keep your relative comfortable, alert when they want to be alert, and at peace.
There are myths about end of life morphine that I’d like to dispel. Used properly, morphine does not hasten death. It manages pain and breathlessness. The doses we use in end of life care are calibrated to need, not to standard amounts. A frail elderly person who has not had opioids before is started on very small doses, and we titrate up only if needed. Morphine, well used, gives people the dignity of being conscious without being in agony.
What does the actual dying process look like? It varies. Some people decline gradually over weeks or months. Some go very quickly, particularly after an infection or a stroke. There are patterns — reduced appetite, increased sleep, breathing changes, a withdrawal from the world. We see these patterns. We tell families what we’re seeing. We don’t pretend we know exactly when someone will die — nobody can — but we can usually tell when the last days are approaching, and we phone the family.
What about being present at the moment of death? Many families want to be there, and we do everything we can to make that possible. We’ll phone you when we think the time is close. We have a comfortable chair for the family, a small bed if you want to stay overnight, tea and coffee available at any hour, a kitchen you can use. We’ll leave the room when you want to be alone. We’ll come back in to check, give medication, or sit with you, depending on what you want. Some families want a member of staff present. Some want to be alone. Both are fine.
Some people die very peacefully with family around them. Some die in the small hours when nobody is in the room. Some seem to wait until the family briefly steps out for tea. There’s no pattern, and no “right” way. We’ve had a daughter sit at her father’s bedside for three days, leave for ten minutes to use the bathroom, and come back to find he had died in her absence. She was devastated. We told her what we tell every family: some people, often unconsciously, hold on while loved ones are watching and let go when they’re not. This is not abandonment. It’s the way it often goes.
What happens immediately after the death? We don’t rush you. You can stay as long as you want. You can wash and dress your relative if that’s culturally or personally important — we’ll help. You can hold a small prayer or vigil in the room if you want. You don’t have to call the funeral directors immediately. There’s time. We’ve had families spend two or three hours sitting with their relative after death, and that’s completely fine.
We’ll then verify the death (a nurse can do this for an expected death; we don’t need a doctor in the middle of the night for an expected death anymore). We’ll inform the GP. We’ll wait for whoever you’ve asked us to inform. When you’re ready, you can call the funeral directors, who will come to collect. We’ll have your relative’s belongings packed for whenever you’re ready to take them.
Bereavement support matters. Most of our families stay in touch with us after a death. Some come back to visit other residents they got to know. Some come to our memorial service, which we hold once a year for all the residents who have died. Some just send a card on the anniversary. Whatever feels right to you is right.
If you’d like to talk to us about end of life care — either for a relative who is approaching it, or because you want to plan ahead while everyone is well — we welcome the conversation. There’s no awkwardness on our side. We do this work every week. Aldridge Court Nursing Home, Little Aston Road, Aldridge, Walsall WS9 0NN. Drop in any time, or call 01922 455731.