Now more than ever we need to talk about how we want to die

The coronavirus pandemic has brought death and dying to the forefront of the public’s consciousness.

As an anaesthetist working in a London intensive care unit, it is part of my daily life. Within a matter of weeks it has become everyone’s business.

Throughout my career I have been involved in the care of critically-unwell patients. All intensive care doctors accept that in spite of our best efforts, some people will not survive.

Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too, so they may die without discomfort. This is true of any intensive care ward, at any time, but Covid-19 has further highlighted the importance of good end of life care, as we are seeing record numbers of very unwell people admitted to the hospital.

When the intensive care team is called to admit a patient, we try our best to establish their wishes with regards to treatments.

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Have they thought about intensive care and life support? If their heart or breathing was to stop, have they thought about whether they would want the medical team to attempt cardiopulmonary resuscitation, for instance?

Whenever we can, we explain clearly what the treatment options are and the risks and benefits of each; we ask them what their own priorities are and answer any questions they may have. Then we adjust the treatment goals to best suit that individual patient.

But sadly, there are times where this communication is not possible and both the team and patient are robbed of that opportunity. That is why I am so passionate about what is known as advance or anticipatory care planning, or what I prefer to call advance life planning. 

This is where people are given the opportunity to talk through their priorities and concerns for the end of life and translate them into a plan for their future care and treatment. This may include a Living Will (a legally-binding document also known as an Advance Decision or Directive) to refuse certain treatments and an Advance Statement to record other preferences for care.

People may also wish to nominate a trusted person to make healthcare decisions for them if they become unable to, using a Lasting Power of Attorney for Health and Welfare. These documents are then shared with healthcare professionals and loved ones.

I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly

All intensivists can recount a story in which, acting in good faith, a patient was put on to full life support, only to subsequently learn from loved ones that this action was against that patient’s end of life wishes.

This is not only heart-breaking for all involved, going against our core belief to ‘do no harm’, but it also denies that person the chance to be kept comfortable in a place of their choosing to say a meaningful goodbye.

This pandemic means we can no longer shy away from death. It is an inevitability of life and conversations about death should no longer be taboo.

It is now more essential than ever to talk to our loved ones about what a good death would mean to us as an individual.

For some, the most important thing might be remaining as pain-free as possible. For others, the priority might be to remain as lucid as possible until the end, or dying in a place of their choosing, whether that is at home or at a hospice, surrounded by their loved ones.

Some may want to accept all efforts to keep them alive as long as possible in spite of the risks. An Advance Statement can record information like this, and while it is not legally-binding like a Living Will, it should be taken into account if decisions need to be made on your behalf about your care and treatment. 

I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly. It also assists medical professionals like myself to continue to act in the best interests of our patients by respecting their wishes.

By recording them as clearly as possible now and sharing them with your family and your GP, you will be far more likely to get the care and treatment that’s right for you when the time comes.

Know that if you do want to put plans in place, you are not alone.

The charity Compassion in Dying – for which I am clinical ambassador – aims to help people prepare for the end of life; how to talk about it, plan for it and record their wishes.

The MyDecisions.org.uk free site, which guides people through different scenarios so they can record their wishes for future care and treatment, has seen the number of completed Living Wills in the last month surge 160 per cent compared to the same period last year, and completed Advance Statements are up 226 per cent.

One might therefore conclude that the coronavirus is prompting people to consider and record their wishes for the end of their lives – some for the first time – and that is to be welcomed.

One might also conclude that the coronavirus is prompting people to consider and record their wishes for the end of their lives – some for the first time – and that is to be welcomed.

These are unsettling times, but know that healthcare teams in hospitals will continue to work hard to care for our patients, whether that means supporting them to a full or partial recovery or enabling them to have a dignified death.

For those who have already taken the time to document their wishes for the end of life, I am thankful. To those who are thinking about it, I appeal to you to do so.

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