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In this second of a series of OpenLearn articles linking to The Ageing Well Public Talks (AWPT) Series structured around Five Pillars for Ageing Well that runs every year at The Open University, we are going to discuss how we could prepare for a home death.
Earlier in the AWPT Series, we discussed Advance Care Planning presented by Barbara and Erica. You can also see an an OpenLearn article on Advance Care Planning (ACP) that includes a short film co-produced with practitioners and people with lived experience.
Barbara has presented on several occasions on The Ageing Well Public Talk Series complementing the series and sharing with their audiences 'What do we need to know to age well?' A more in-depth approach to 'What do we need to know before we die and to die well?'
Barbara is the author of this article and will present her account based on her extensive experience as a nurse, therapist and manager working in hospice and palliative care for 40 years.I write this from the perspective of a white western European mother, and grandmother. I know there will be people and cultures that will have different views about how we should prepare for death, but in this series of articles, I will be focusing on my thoughts about western practices, especially those I have experienced in England, UK. - Barbara
In my last article I mentioned that when preparing for death and caring for someone who is dying, we should use preparing for birth as a guide. I was thinking about those similarities, as my daughter and I prepared for the birth of my granddaughter. We read the book Your Baby, Your Birth: the process of birth, how the body prepares, how to make plans and cope when those plans need to change. Where, I wonder, is a book about Your Death?
Preparing for a home death is like preparing for a home birth but in reverse. The caring journey may begin sometime before death. Yet some principles are the same. You need to think about the best room to care for someone, and how you might cope as someone becomes less mobile. What view will they have from their bed? You may be loaned a hospital bed, or do you still want to share a bed with your partner? What equipment or bedding do you need, where to get it from and how to make space for it? How to get someone to the toilet and what to do if they can’t. Do you need to learn how to give medicines, even injections?
Local community nurses are a good source of information and advice. There might also be people in your community who have experience in caring and will have some suggestions.
Getting hold of things quickly can be difficult so it’s good to be prepared about what you will need. Ask about the professional health and care support system in your area, which can be done with your local community nurse or carer support groups. There are also Death Doulas who offer support like Birth Doulas.
Building a support networkCaring is a privilege, a joy and hard work. We all often find it hard to accept help but having a network of people who can support you can make all the difference. Looking after someone means that simple things like shopping, washing, cooking, gardening and collecting children from school are all harder to manage. If you don’t have friends who can help, there may be local community groups in your area who might help you find support.
Although the person will become more tired, they may still want to be doing things and enjoying life as much as they can. So, trips out and being with family or friends may give much enjoyment and can create treasured memories.
In the same way that most women would like a ‘natural’ birth’, if asked, most people would like a ‘natural’ dignified death. So, an important conversation you need to have as part of your advance care planning is to talk about Cardio Pulmonary Resuscitation (CPR) with your doctor or care team. CPR is about restarting the heart and breathing.
Breathing changes and the heart stopping is part of a natural dying process. Thinking CPR could work may offer false hope and do more harm than good. CPR can be life-saving for people whose heart and breathing have stopped because of something which can be reversed. It almost never works for people who have severe illnesses such as advanced cancer, heart and lung disease or neurological conditions.
CPR is a forceful treatment using electric shock, deep pushes into the chest, as well as using tubes into the airways and injections. Therefore, after a discussion with patients and families, doctors may record a recommendation of ‘Do Not Attempt Cardio Pulmonary Resuscitation' (DNACPR) in your notes. Sometimes a copy will be held at home.
If you do not have that discussion and a DNACPR is not recorded, a healthcare or ambulance team will likely try CPR if your heart and breathing stop unexpectedly. They may think there is a chance of recovery and not be fully aware of your conditions. This can be very distressing for everyone involved.
Having a DNACPR is not about giving up hope, or giving in. It is about making sure you understand the treatment which is right for you and which will not leave you in a worse condition.
Understanding normal dying
Few people have experienced being with someone who is dying. Dr Kathryn Mannix is a Palliative Care Doctor and author who talks about dying and how the body changes. I thoroughly recommend her books and videos and I have drawn from her words in describing what you might expect when being with someone who is dying.
Dr Mannix explains how dying may not be as bad as people expect. People become less mobile and are less interested in food or drink, they get tired and sleep more. Families may notice this sleep is different as they may not be able to wake that person up as they have become temporarily unconscious. But when people wake, they just feel as if they have had a good sleep, so it is not frightening for them.
Some people spend more time asleep and less time awake, and may eventually be unconscious all the time. People next to them will see how breathing changes fast and slow. We know people can still hear, so it is important to talk, play music and be present with people, letting them hear children coming and going.
When people are unconscious and so deeply relaxed, they are unable to clear their throat. This means saliva collects at the back of their throat and when they are breathing you can hear a rattly noise. People sometimes call this the ‘death rattle’, but it is like snoring; others can hear it, but the person cannot.
Breathing gradually becomes shallower and more spaced out until the person takes their last breath.
Understanding your emotions
The emotions people feel are very similar to the feelings of grief and can start as soon as you know someone who is going to die. This is often called ‘anticipatory grief’. The rollercoaster of feelings can be overwhelming and may include sadness, anger, frustration, hopefulness, fear, anxiety and guilt. It is important to understand how normal these feelings are and it can be helpful to be with people who understand and will listen: family or friends. It is equally important to get some respite from this rollercoaster and look after yourself with a break with whatever helps you.
When someone dies
Your healthcare professional will have left advice as to who to contact, as the death will need to be formally verified before the undertaker can come. One would normally contact your GP or your local out-of-hours service.
There is normally no urgency for the undertaker to come and some people appreciate some time with the person who has died. If you are on your own, you may wish to ask someone to be with you.
It is useful to think about what you want to happen after death, and whether there are rituals which are important to you. Some people choose to keep the person at home until the funeral and even manage the funeral themselves. If you do wish to use an undertaker, it is worth choosing one and having the number ready, rather than looking for a number when you are shocked and upset.
- Many organisations have helpful advice when caring for someone at home. This might be from your local hospice or national charities like Marie Curie.
- Coping with Breathlessness
- Talk CPR Wales
- Death Doulas
- Talking to Children about dying and death
Dr Kathryn Mannix's books
- With the End in Mind: Dying, Death and Wisdom in an Age of Denial
- Listen: How to Find the Words for Tender Conversations
Dr Kathryn Mannix's videos
- Talk CPR Wales has some good information and videos about Cardio Pulmonary Resuscitation
- Natural Death Centre and the Good Funeral Guide hold much information and dispel myths about what you can and cannot do yourself.
- Vseteckova, J., Borgstrom, E., Whitehouse, A., Kent, A. and Hart, A. (2021) Advance Care Planning (ACP ) - Discuss, Decide, Document and Share
- Five pillars of ageing well
- The Ageing Well Public Talks