Difficult conversations to have while we still can

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“Whatever you want to do, do it now. There are only so many tomorrows.” Michael Landon

At the start of lockdown, Robert Peston, TV journalist, wrote an article reminding us that in these strange times of the coronavirus, 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 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. 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.

It is far better to have these conversations now, while we are well and able to say what we would like to happen. We need to think about what it would mean to us to be faced with the possibility of catching the coronavirus and becoming so ill that we might die. Many have already lost loved ones at home, in care homes or in hospital and sadly many more will do so before this crisis subsides. It’s important to understand what we would want if faced with end-of-life decisions, and what our loved ones would want.

Of course, we don’t always know the answers or understand what the best options are, but it’s still important to take the time now to think about it for yourself and have these conversations with your loved ones. The questions to consider are about how and where you want to die if you become terminally ill with the coronavirus, and how much risk you are prepared to take with treatment.

What we know from Kathryn Mannix’s clear description is that:

  • Most 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 it’s 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, you will have to make a decision quickly. While we may not know how we would 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 and 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. Or you may choose to arrange this now. Some people already have a lasting power of attorney in place. You might also speak to your doctor or healthcare provider, or simply have the discussion with your loved ones and make a short statement of your wishes. These are not easy conversations, but it’s so important to make a start.

If you knew that you could have a good death, what would this look like? Consider the various things that might bring you and your family comfort in your dying moments. Think about whether you would rather stay at home with your family or be treated in hospital, even if this means being alone. Before it becomes too difficult, make a list of who you might want to speak to before you die, and how best to do this – phone, video, letter or message for example.

Importantly, if you become ill enough to need a ventilator, it will be because you are sick enough to die without it and the doctor thinks you can be helped. 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. Consider now what risks you are prepared to take.

Finally, as we consider the possibility of death, have a think about what it tells you about your life and how you want to live it. Hopefully, most of us will not catch coronavirus or lose a loved one during this pandemic. But this is an important opportunity to consider your own choices and wishes; to tell others about them, and to find out what matters to yourself and your loved ones.

This report is based on an article by Julie Barnes originally published by the Oasis School of Human Relations in Wetherby and available from their website as a free resource and from the Soul Midwife Shop.