Talking about death and dying
Exploring choices and wishes for ourselves and our loved ones
by Julie Barnes
“Whatever you want to do, do it now. There are only so many tomorrows.” Michael Landon
Difficult conversations to have while we still can
In a recent article, Robert Peston, TV journalist, reminded us that in these strange times of the Corona Virus, we are being confronted with questions that we rarely want to face. How do we want to die and how far do we want medical professionals to go in helping us to survive, particularly if the outcome is a reduced quality of life? Doctors now have to ask this question of very sick people and their families, often at a crisis point in people’s lives, at a time when people are alone and afraid.
When I developed a cough last week, I felt scared that, should it worsen, particularly in the night, I might need to call emergency services and make a choice about whether I stayed at home or went to hospital alone, without my husband. Or maybe I wouldn’t even have a choice. It got me thinking about what was important to me and what I might choose to do. And, as Dr Kathryn Mannix, points out in her recent article, it is hard to think clearly and make big decisions when we are breathless and the oxygen levels in our blood are starting to fall. As a Palliative Care Doctor, author and campaigner, she has been encouraging us to think and talk about our choices and wishes, while we still can.
How much better if we can have these conversations now, while we are well and able to say what we would like to happen? What does it mean to us to be faced with the possibility of catching the corona virus and maybe becoming so ill that we might die? What if we lose our loved ones, either in hospital or at home? What would you want to happen? Do you know what they want?
Of course, we don’t always know what are the best options, but can you take the time now to think about it for yourself and to have these conversations with your loved ones?
What are the questions?
The questions are about how and where you want to die if you become terminally ill with the Corona Virus and how much risk are we prepared to take with treatment? What we know from Kathryn Mannix’s clear description is that:
A lot of people will have mild symptoms and will get better at home.
Some people will require help in hospital, particularly with breathing via oxygen or a ventilator.
If you go into hospital, it is likely that you will have to go alone and your family or friends will not be allowed to visit you, even if you are dying. You might die alone.
If your breathing becomes so difficult that ventilation is required, this can be traumatic for your body, and can leave you in a weakened state, particularly if you are already vulnerable or very elderly.
Not everyone will be offered ventilation. If the consultant thinks that the patient will benefit from ventilation and make a full recovery, then they may be offered it. But there are no guarantees that it will work; they will be weighing up probabilities.
If the consultant thinks that death is not avoidable, and that use of a ventilator won’t save the person’s life but might well make dying take longer and be more unpleasant, then that person won’t be offered one.
Between these two scenarios, says Mannix, there is a tricky third scenario. ‘The person is sick enough to die without a ventilator, but also so damaged either by the virus or by other conditions they already had…that its uncertain how well they would be if they survive. For example, they may never be able to breathe sufficiently again without a ventilator; they may get off the ventilator but be so damaged that either they can’t think clearly anymore, or can’t manage to live independently any more. For these people, it is really important for the ICU consultant to know whether the patient would accept that risk. But the patient won’t be in any fit state to discuss it.’
In an emergency situation, you will have to make a decision quickly. While we may not know how we will respond in that particular moment, if we have talked about our choices and wishes in advance, this may help us, our families and our health care providers.
Have that conversation. Get your ideas, wishes, concerns, hopes, values written down. You might already have made an Advance Decision about your treatment, for example, a RESPECT agreement* or Do Not Resuscitate (DNR) plan. You might have a Lasting Power of Attorney. You might speak to your doctor or healthcare provider. You might have the discussion with your loved ones and make a short statement of your wishes. These are not easy conversations, but so important to make a start.
Important questions about what really matters to you might be:
If you are feeling critically unwell, would you rather stay at home with your family? Or would you want to be in hospital, even if this means being alone?
If you are offered a ventilator, it will be because you are sick enough to die without it and the doctor thinks you can be helped’ (Mannix). You can choose to refuse a ventilator if your doctor feels there is a risk that you will not fully recover, or your quality of life will be limited by the effects of it. What risks are you prepared to take?
As you think about the possibility of your own death, or the death of others, what really matters to you? Where do you want to die? Who will be with you?
If you knew that you could have a good death, what will this look like?
Is there anyone you want to speak to before you die? Are there people you want to say goodbye to, and how will you do this? e.g. by phone, video, letter or message.
What will bring you, and your family, comfort in your dying moments?
In facing the possibility of death, what does this tell you about your life and how you want to live?
AN INVITATION TO TALK WITH OTHERS
CAFE CONVERSATION: Please join us at Oasis for a virtual Cafe Conversation via Zoom. We are talking about death and dying: an opportunity to explore our choices and wishes for ourselves and our loved ones.
Places will be limited to 20 people and we will use breakout rooms to enable participants to talk in small groups about their choices and wishes in relation to treatment, death and dying. We have found these conversations to be rich and rewarding opportunities to talk together about these essential questions, and for exploring thoughts and feelings.
They are not intended to be therapy sessions, and yet may bring up strong emotions. They will be facilitated by experienced Oasis Associates and will be confidential and respectful conversations.
The first two CAFE CONVERSATIONS will be on the following dates:
Tuesday 5 May 11.00-12.30 & Thursday 14 May 2.00-3.30
If you would like to take part, please e-mail Pippa Farrington at Oasis indicating which date works for you and Pippa will send you the link invitation. If these prove popular, we will offer more dates and times, so let us know if you are interested but can’t attend either of these.
References
Kathryn Dreger What you should know before you need a ventilator. New York Times April 2020 cited in Frank Ostaseski article on Facebook, April 2020.
Kathryn Mannix, Today I was asked a great question. Article on Facebook, March 2020.
Kathryn Mannix, Podcast, The Coronavirus Newscast: Bad news, BBC Sounds, 1 April 2020.
Robert Peston Covid-19 will make us confront how we want to die, Peston’s Politics, ITV.com 30 March 2020.
Other articles by Robert Peston HERE and HERE
RESPECT*: Recommended Summary Plan for Emergency Care and Treatment, piloted in some Health Authorities Respect.
Felicity Warner Soul Midwives School
Julie Barnes is an Oasis Associate offering counselling, coaching and facilitation to individuals and organisations. She is a volunteer counsellor at the Nottinghamshire Hospice and a practising Soul Midwife supporting people in relation to death and dying. The Oasis School of Human Relations has worked with bereavement, grief and loss at local, national and global level for over 30 years including work with HIV/Aids, and with Social Care and NHS partners.