Conversation at the end of a life well lived

Watching a loved person die is painful and confronting. Don Campbell urges patients and their families to have their own difficult conversations in advance to help doctors provide compassionate care at the end of a life well lived.

The first time I watched a man die was in 1979. I was then a young intern resplendent in my starched white coat. On this day pneumonia truly was the old man’s friend. He was alone, so I drew the curtains, sat on his bed and held his hand. In this brief moment I recognised that death becomes part of life and contributes to its meaning.

Since that day I have watched many patients die. It isn’t always grim; once a patient said to me, “Don’t worry doc, I’ve had a good life, and I mean a bloody good life”. From the next bed on the other side of the curtain came the question that was already on my lips, “If you don’t mind me asking, just how bloody good was it?”

Thirty five years later, at the start of the 21^st century, as so many more people live to advanced old age, we are confronted with a new challenge: How can we have an easy death at the end of a life well lived? For many people death at the end of a long illness follows a discussion between the doctor and the person, and more particularly their family, culminating in a decision to shift the goals of care from restoration to supportive care and relief from suffering. Families frequently struggle with these discussions, whether unable to confront their own mortality and their grief in anticipation of loss or interpreting participation in the discussion as abandonment of their loved one.

Advanced Care Directives that will inform healthcare professionals about a person’s wishes for treatment, including the refusal of treatment other than palliative care, can be completed as a record of a decision following discussion with family. Advance Care Directives can be very helpful when they are an artifact of the prior conversation within the family. An Advanced Care Directive does not cover the responsibility of the doctor to decide whether treatment is futile, nor does it assist decision-making where doctors feel that treatment is futile but family members wish the care team to persevere with active treatment in the face of futility. No person has the right to demand treatment that is deemed to be futile, yet doctors frequently persevere with treatment in the face of futility because of an inability to enter into an honest dialogue with patients and their family.

In the course of my professional life I have had many extended conversations about changing the goals of treatment at the end of a life well lived with patients and families, as a very conservative estimate perhaps 1000 times. I will find the next such discussion as harrowing as the first. Some of these conversations are profoundly moving experiences that affirm the essential humanity within us all. In many cases however, the discussions are deeply traumatic for all parties, occurring as a recursive set of discussions over a period of days to weeks. The discussions sometimes reveal an inability on the part of the family member to separate their own suffering while watching a loved person die, seeking to repel and deny those feelings by rejecting the idea that their loved one is dying. Family members often have difficulty letting go.

Every day in every public hospital in Australia we witness indecision and prolonged treatment in the face of futility for such patient. This reflects the dilemma that exists in the minds of the doctors and nurses about what we would want for ourselves, our parents and our family members and our reluctance to do what we think is ultimately right without taking the family with us on that journey of realisation.

We have come a long way since 1979, but the world we inhabit is increasingly complex. Our expectations of care at the end of life have changed, and the numbers of people in this situation have increased remarkably.

We need to be able to participate in what we are coming to know as Difficult Conversations. Doctors are starting to be trained to have these conversations. No doubt this will help. Just as importantly we need people who will become patients and their families to have their own difficult conversations at home beforehand, even thought this can be painful and some families struggle to talk.

How will we Australians with all our different ethnicities, cultures and values prepare for this conversation? I am confident we can, but just as our young doctors need training in difficult conversations, our communities may well need to prepare to have the conversation at home first. Then an Advanced Care Directive can be completed. This can be used to guide the doctors as to what a person wants, but it needs to start with a conversation in the home first, however difficult.

How do you start the conversation? You will probably have to rehearse this. If we are going to provide compassionate care that allows a person to die an easy death at the end of a life well-lived, we need families to have examined their own thoughts and wishes before they have the difficult conversation. Eventually, everyone in the family is going to need to contribute, including the absent disenfranchised members of the family such as “My son who lives in Sydney” and “Cleopatra, the Queen of Denial”.

After the conversation has been had, the person and the family can begin to think about completing an Advanced Care Directive. Then we doctors and nurses can provide compassionate care instead of having a protracted period where the patient suffers needlessly because we (all of us) haven’t come to terms with our own mortality as the precondition to discussing what our loved one’s wishes are for their death and the limits to medical care at the end of a life well lived.

0 Comments

1. 

   Clive Leach

   April 12, 2014 at 1:20 am

   Thank you

   Thanks for this Don, thought provoking, moving, challenging and very important.