Neil Orford on 08-06-2016
The following opinion piece was published on ABCs The Drum, after a televised Death over Dinner. Is it time to improve our skills as communicators?
The current public discussion about dying appears focused on a few issues. Most of us want to die at home but don't, our last months are diminished by overly medicalised care, and access to assisted dying has not been resolved. It seems we want a good death, in control, free from pain, surrounded by loved ones. So what does this look like from the other side, from a clinician who sees a lot of dying?
To provide some perspective, we are expert at saving lives and appropriately most of our attention goes towards this. In our intensive care units, eight out of ten patients are alive a year later, a percentage we constantly work to improve as we seek to remove avoidable death. However there are patients we cannot cure, who are dying from an irreversible disease - metastatic cancer not responding to treatment, severe frailty and dementia, end-stage organ failure – who are easily left behind by the relentless push for cure. Many don’t know they are dying until the final days of life, don’t get much say in what happens to them in their last month of life, and as a result don't have a good death.
Are there solutions that address the concerns of our community, and my worries?
To answer this we could consider two patients. The first, a nineteen year old, just out of school, a life of possibility in front of her. A cough becomes more, a bruise gets bigger, and within weeks her world has changed. A new aggressive malignancy, opportunistic infection running rampant through previously healthy organs, the result an almost unrecognisable young woman on multiple machines in an intensive care unit. Despite weeks of the medical intervention her organs are failing beyond the ability of our technology to support her, and she is dying.
The second, an eighty-year old fading with dementia from a proud and active life, with a new fracture from another fall. As disease takes its toll, he becomes increasingly confused and weakened, and the hopes for his last months change from spending his remaining time in the comforting environment of home surrounded by loved ones, to the reality of cycling through hospitals and nursing homes, receiving treatments to prolong life in a progressively weakened state, and a messy death in a unfamiliar room.
It may seem these two have little in common, a young person with sudden, aggressive cancer not responding to treatment, and an elderly person with the gradually accelerating decline of dementia. The truth is both will reach a point where medical therapy will have little effect on how long they live, and every decision made will affect the quality of how they live in their last month of life. At this point, they have a lot in common.
If they want to die at home, avoid over-medicalised care, minimise pain and suffering, there are issues that need to be addressed. They need to know what they value, what their goals are in this last month, and what they are prepared to compromise or endure to achieve them. In practice most patients and families have not had these conversations, and under the immense emotional stress that accompanies end-of-life decision-making struggle to give up their inherent optimism and hope for a cure, change the focus of their strength to support a good death.
They need a skilled, compassionate medical team to tell them they are dying, listen to them, understand what is important to them, and provide understandable medical advice about risks and benefits of treatment options that aligns with their goals. In practice it is more likely they will meet health professionals that mean well, but are not skilled in handling difficult conversations, dealingwith their own bias, prognostic uncertainty, and the grief in front of them. The result, a transactional exchange where doctors provide information about treatment options but don’t discuss death. Goals and values remain unspoken, and we receive treatments we may not want given a choice, that don’t prolong our life, possibly cause us harm, and have an over-medicalised death in hospital.
How can we do better? In these scenarios, in my workplace, assisted dying is unlikely to be of immediate help. At its simplest assisted dying is another treatment choice, all be it with an intention that creates considerable debate. However like all treatment choices, you can only access them if you are able to discuss dying, goals, values, and choices. This is where we fall down.
We can fix this. As a society we can learn to talk about our goals and values, living well, and what this means at the end of life. The recent introduction of Death over Dinner, the American project aimed at improving how we die through the power of shared conversation at the dinner table, is one example of how we might achieve this. It asks us to come together, overcome the reluctance to talk freely about people we have lost and share our thoughts on what a good death might look like.
On the other side of this conversation, we need to teach communication skills to our health professionals. How to start actively listen, use empathy, confront our own biases, and align medical advice with patient and family needs. The traditional apprenticeship model of learning on the job has failed. These skills are not inherent, they can be taught effectively, and it is time to make this a priority, to ensure shared decision-making becomes standard practice.
We are worried about dying, because every day, there are patients dying from irreversible diseases, who are unprepared, who receive care that is burdensome, and who as a result lose time to participate in what they value. Lets learn to talk about dying, and do it better.
Associate Professor Neil Orford is Director of Intensive Care, University Hospital Geelong, a Death Over Dinner Australia Ambassador (www.deathoverdinner.org.au), and the clinical lead of i-validate “identifying values, listening, and advising high-risk patients in acute care”
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