This week, Dementia Carer Voices would like to share Ken Donaldson’s powerful Viewpoint piece about end of life care. Ken Donaldson is a Consultant Nephrologist and Associate Medical Director at NHS Dumfries and Galloway.
“I’m sorry but I think you are dying.”
To any clinician these are hard words to say. For patients they may be harder to hear however for some they are a
relief as they have come to terms with the fact that they are dying. Sadly, because we perceive the impact of saying them, we tend to avoid them and focus on what we, the clinical body, do best – diagnose illness, organise tests and formulate management plans. Even though it may be obvious to all that an individual is facing the end of their life we often we cling to the hope offered by modern medicine and its miracles.
I was struck by a story a colleague told me a few years ago about a patient he had been referred. My colleague is a kidney doctor like me and had been asked to see an 85 year old gentleman, who I shall call William, on another ward in our hospital. William had been in hospital for 2 weeks. He had been admitted with lethargy, fatigue, poor appetite and weight loss. Initial blood tests had revealed a kidney problem and he had been thoroughly investigated by the admitting team to establish why. In that 2 week period he had had; a gastroscopy (flexible tube inserted into his stomach), an ultrasound of his abdomen followed by a CT scan of the same area. On a separate day he had a CT of his head. He had had blood tests done every day. The team then came to the conclusion that his kidney failure was irreversible and the cause of his symptoms and decided to call my friend to initiate kidney dialysis.
William had a number of medical problems. He had heart disease and had undergone a quadruple bypass operation 10 years prior. He had heart failure and poor blood supply to his legs. More significantly he had dementia and struggled to maintain a simple conversation. My friend established that he lived with his wife so found her number and gave her a call. Williams wife had a number of health problems herself and was housebound. When my friend called her this was the first contact she had had since William had been admitted. She had phoned herself a few times but had been informed William was comfortable and would ‘be home soon’. Once my friend had outlined the situation – end stage kidney disease, multiple co-morbidities, possible dialysis with all the difficulties associated with that treatment – Williams Wife interjected. “He wouldn’t want any of this. We spoke about this kind of thing some years ago and both agreed that we didn’t want to be in hospital and attached to machines. I know he would just want to be at home.” After hanging up my friend contacted our Specialist Palliative Care team for help, support and advice.
This scenario brings a number of questions to mind. How could the team caring for him really understand what his needs were, who he was and what he might want when he had a clear diagnosis of dementia and they had not sought information from his next of kin – his wife? Had no one considered how his wife may be feeling? She was isolated and had practically no contact with the hospital. She admitted to my friend that she had not pushed for more information because she new everyone was very busy and doing their best. Had it not crossed anyone’s mind that this elderly gentleman may be at the end of his life? He was seen daily by doctors nurses and other specialists, surely one of them must have considered this.
In Atul Gawandes recent book, Being Mortal, he touches on many aspects of end of life care that would be relevant to Williams case. In particular he stresses the importance of palliative care input at an early juncture. He cites a landmark study from Massachusetts General Hospital where patients with advanced lung cancer were randomised to either full treatment with chemotherapy or full treatment AND referral to palliative care. The group with palliative care input had discussions about their goals and wishes should they deteriorate. This group elected to stop chemotherapy sooner, entered a hospice earlier and had less suffering at the end of their life. What is more striking is that they also lived 25% longer than the group with no palliative care input. In Gawandes words “our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussion were a drug, the FDA would approve it.”
It is often easier to start end of life discussions when the diagnosis is one of advanced, untreatable cancer or of another similarly terminal disease. Sadly we have an increasing number of patients like William who are slowly and gradually approaching death without a single obvious cause. They have often realised this truth long before the medical teams caring for them. They are usually reluctant to raise the topic as it can sound defeatist, like they are giving up. It’s up to those medical teams to gently introduce the topic, include the palliative care teams and ensure we are asking the right questions. It doesn’t mean that we don’t treat, we just treat with a common understanding of what we are likely to achieve and with realistic goals.
William was seen by the palliative care team who arranged for him to get home the next day. He died 11 days later, in his own bed, comfortable and at peace with his wife beside him. This is a ‘good death’ but it niggles me that he needn’t have been put through quite so much in what turned out to be the last few weeks of his life.
You can follow Ken on twitter @kendonaldson