Our panel of healthcare professionals, patients, campaigners, authors, and journalists, as well as the hundreds of people tuning in via Zoom, came together to discuss what lessons we can take from this pandemic when it comes to talking about and planning for the end of life.
We put this question from Lisa Hallegarten to our panelists:
I was recently interviewed by a BBC journalist about my elderly father’s decision to request a DNACPR (do not attempt cardio-pulmonary resuscitation). The journalist asked me how I felt and when I responded that I felt good about it he asked rather insistently, but how did you actually feel?
It seemed incomprehensible to him that someone could be pleased that someone they loved had done this.
Do you think this interaction reflects a wider culture in which we overvalue quantity over quality of life; and in which we undervalue people having personal agency over decisions concerning their bodies and lives?
It feels to me that there is no healthcare protocol that can adequately address the cultural aspects of this, and it cannot be left to doctors to deal with at the most difficult moment in people’s lives.
So what is society’s broader responsibility to change this conversation and where should we start?
Molly Bartlett — patient advocate
I can really relate to this — I am a patient and have a DNACPR and Advance Decision to Refuse Treatment, which has given reassurance to both my partner and myself. I also made a decision not to pursue some suggested interventions which were not curative because I value the quality of my life over the quantity. I am 72 and I know some people who fear any form of ageism and imagine wanting a DNACPR is borne out of societal pressure.
I want to encourage each of us to ask about the benefits, the risks, the alternatives and the consequences of doing nothing, for any treatment or intervention.”
However I think personal agency and the strength and weighting given to each person’s individual voice is crucial if we are to ensure people feel able to make decisions for themselves and to ensure others can respect such decisions.
We should not be surprised or afraid if some people, including older people, realise that they could lose a lot of their quality of life and choose to avoid interventions which they consider of little benefit to them as an individual.
Since my decision to refuse some treatments I have already lived more years than we could have expected and of reasonably good quality too. I want to encourage each of us to ask about the benefits, the risks, the alternatives and the consequences of doing nothing, for any treatment or intervention.
Our societal conversation needs to shift in tone to one that celebrates our capacity to make decisions as individuals. Education and media coverage needs to provide examples that show this in an open way that assists us each to think about it.
Liz O’Riordan — breast surgeon with breast cancer
I’m not surprised by the attitude of the journalist. It seems impossible for any media outlet to imagine someone wanting to die naturally in hospital. On the contrary, it’s accepted for this to happen at home.
We need to start normalising death and helping the public and journalists understand what CPR means.”
Not doing CPR means exactly that. It means that if your heart stopped, you would be allowed to die in hospital without intervention. It doesn’t mean, as so many people believe, that every treatment is stopped. A DNACPR request means that your doctors will do everything they can to keep you alive until the moment that your heart stops beating.
What doesn’t help is that TV shows and films don’t show the reality of CPR in hospital. You might assume that it’s the same as when someone has a heart attack in the community. If they’re lucky, there’s an experienced first-aider and a defibrillating machine near by or an ambulance a few minutes away, they stand a reasonable chance of surviving CPR. What happens on a hospital ward is almost the exact opposite. The vast majority of people who die on a hospital ward will not survive despite immediate, prolonged resuscitation by a team of experts. It’s not a calm and peaceful situation. There are people everywhere. Clothes and gowns are stripped off for access and there’s so much noise as staff desperately try to save someone’s life.
I know that if I was ever ill enough to need to stay in hospital for any length of time, such as my cancer coming back, I wouldn’t want CPR. I’d want to be allowed to go peacefully and privately instead of being the aftermath of a failed resuscitation. I’ve done what I can to have a high-quality life. Why can’t I also want a high-quality death?
Anushka Aubeelack — Intensive Care Anaesthetist
The interaction with the BBC journalist is not surprising. I believe that we have been living in a society that has medicalised dying and death to the extent it is bizarre a patient would choose to not pursue full treatment, even if the chance of success of that treatment is minimal.
Talking more honestly about realistic expectations of medical treatment and what we individually value for our end of life care is important.”
Dr Anushka Aubeelack
The huge advances in medical treatment for previous terminal illnesses has influenced this. Another contributing factor is an unrealistic portrayal of the success of cardiopulmonary resuscitation (CPR) by the entertainment industry. We have also transferred death from in our homes with loved ones present to a more clinical environment surrounded by medical teams. That and the discomfort that conversations about dying can bring has lead to us all becoming desensitised to the realities of death.
I would like to think that this has not led to an overall revaluation of quality of life. Indeed, in frank conversations about the impact of a potential treatment which may worsen their quality of life, some patients choose to make the considered decision not to accept that treatment. The key thing in such choices is an honest and sensitive discussion.
It is this aspect that I believe society as a whole, not just the medical community, needs to address. Talking more honestly about realistic expectations of medical treatment and what we individually value for our end of life care is important. These values, which are yours and yours alone, should be expressed but do not need to be explained. Some might say the conversation is morbid. Having seen many deaths in my career, both peaceful and those less so, I would disagree. Addressing what is important to us regarding end of life care is a positive and empowering conversation to have. Death happens to all of us. It’s the one certainty in life so why would it not be acceptable to plan ahead?
Dr Kathryn Mannix — Palliative Care Physician
This question is so good yet so complicated, I’m confining myself to one aspect of it: the tension between the BBC interviewer’s inference that planning for end of life should upset us, and the need for individuals to take responsibility ‘as a society’ that could be supported, instead of undermined, by media attention.
Yet the single, universal experience after birth, death, is neglected by documentaries, sensationalised in news reporting and trivialised in drama.”
Dr Kathryn Mannix
Being mortal is the human condition. It is fascinating that news and arts media document being human in intimate detail from conception, via birth, to growth and development, emotional and physical wellbeing and ill-health, education, sport, feats of daring and acts of endurance, medical progress and geopolitical tragedy. Yet the single, universal experience after birth, death, is neglected by documentaries, sensationalised in news reporting and trivialised in drama.
Could this be different? And if it were different, what impact might that have?
I’ve spent a career in palliative care; being with people approaching the end of their lives is my ‘normal’ day. If I had only media representations of these people to inform me, I would expect them to be universally miserable, dogged by excruciating pain, confined to their beds and unable to think clearly because of high doses of sedative drugs. Instead, I find them gardening, baking, watching TV, chatting on internet calls to friends. I must make appointments so they can fit my visit into the things that really matter to them: living the last part of life.
How refreshing it would be to have TV documentaries equivalent to ‘One Born Every Minute’ or dramas mirroring ‘Call the Midwife’ to show us ordinary dying: giving us an understanding of a predictable, bodily process that we can describe and recognise; allowing us to be better informed and less afraid.
Normalising the preparations that make the last part of living easier for ourselves and our beloveds, like writing a Will or a Living Will, giving gifts while we can; outlining our funeral preferences or choosing our burial plot; making sure that our dying process won’t be misinterpreted as a cardiac arrest (so a DNACPR notice is a great help); deciding where to live while we’re dying.