EOL care is best managed around a conversation

EOL care is best managed around a conversation

Dr Scott Blackwell
GP & Palliative Care Practitioner

Thursday 8 September 2016

For over 20 years now, the focus of my practice has become more and more about end of life care. Dying is the third important phase of life after being born and living. Yet it gets very little attention in our industry. Twenty years of Palliative Care practice and advocacy roles in Palliative Care WA and Palliative Care Australia have taught me much. In this article, I will lean heavily on my personal experience of the five years I lived with my wife Naomi as she suffered from Multiple Myeloma, leading to her death in February this year. I will also lean heavily on my current Collaborative Primary Care practice in Residential Aged Care.


I choose to write this in the first person because end of life care is about a person, not their disease, not their tumour marker score, nor their pain score. I remember the day we discovered the Myeloma. Naomi had suffered from low back pain for a little while, so a CT scan was arranged. Soon after, I received a call from the Radiologist. “Scottie, you need to come in and have a look at Naomi’s CT, he said There were multiple deposits of osteolytic lesions through the pelvis and lumbar spine, with half of L4 eroded away. “Looks like Myeloma,” he said, adding “Could be multiple secondaries from a primary somewhere, but more likely Myeloma.”


Just holding it together, I rang Naomi at the RACGP where she worked, and said I was dropping in to see her. She met me halfway up the stairs and I couldn’t hold it together a second longer; the tears flowed. Naomi wrapped her arms around me and comforted me while I explained. We talked a while, then returned home and talked some more. And so began the conversation that was to steer us through the next five years. In retrospect, I now realise that EOL care is best managed around a conversation and the best an advance care directive can be is a record of that conversation at a point along the way. Thankfully we could talk.


Subsequent investigations confirmed Myeloma and ruled out secondary malignancy. We had a chance of maybe five years or so, not five months as feared. We cracked open a bottle of champagne. It was a Friday, and every Friday thereafter became Champagne Friday. For Naomi, this was to be about life not about myeloma, and we would just deal with the disease as we had to. Naomi considered the profiles of a few Haematologists and chose David Joske. She thought he sounded like the doctor who would get the idea of life as ‘quality life experience’ and not just time. David proved to be right for Naomi and they developed a dialogue that respected Naomi’s values, which was reflected in treatment choices.


The outcome of this therapeutic relationship was that we lived 10 years in the next five because we were able to live within the reality that we were given. It was all about life. Four years later, we were running out of options. New treatments lasted shorter times and suffering became an increasing experience – 2015 was running true to the pattern of end stage malignancy. There was increasing tiredness and lethargy from the burden of disease in the bone marrow, and increasing disability as the skeletal effects of the disease asserted themselves.

Despite all this, with careful use of medication and radiotherapy, we were able to visit Naomi’s son in California in March, as well as visit Paris with her daughter in September. Hip pain that started in Paris turned out to be due to a crack in the acetabulum, so hip replacement followed. Naomi was rehabilitating well when abdominal distension and constipation set in, and scans demonstrated extra medullary spread of the disease causing a bowel obstruction.


The surgical option was considered but while it may have added an extra two or three weeks to Naomi’s time, it didn’t offer any extra life. With the help of a very understanding surgeon, the surgical option was excluded. We took Naomi home a couple of days later and Naomi’s daughter Danni, two of her sisters Kathy and Josie, her friend Suzy and I cared for her with the help of Silver Chain Hospice Care. With Silver Chain’s expertise, we were able to get through the challenges of terminal restlessness and experience some unbelievably beautiful personal moments before that final breath – a simple sigh and she died.


It’s about the family in the end. The final KPI by which we can measure the success of our EOL care is how well the family grieve after their loved one has died. In our case, this is going well; still very much work in progress but the signs are good thus far. Naomi’s control of her “conversation” and the ability of her clinicians to listen have left us in a very good place to start. The residents of residential aged care facilities (RACF) are a special population in our society who require attention in this discussion around EOL care. Around a third of them will die each year, and average life expectancy in Australia for residents entering RAC is about 18 months to two years.


These are the realities we face in primary care practice in RACF and the starting point has to be about the person. The residents are people. They may be suffering from stroke or dementia or indeed a vast variety of illnesses, but the unifying fact is that they are people. Our most significant question should be: “How are you?” Simply put, our role is to maximise their life experience on their terms, to minimise their suffering, and to bring their family along for their journey.


A family conference early after residents enter RACF is important to start the conversation. Often some hard home truths need to be told about disease expectations, especially dementia which few understand as a progressive degenerative neurological disease, which is now one of Australia’s top five causes of death.


Establishing an honest appraisal of each resident then becomes a starting point for good care planning, which the family can understand and plan their own roles in their loved one’s life. Resuscitation as an option often disappears quickly, which is only sensible given its unlikely success in this environment. Transfer to hospital is also looked at differently. Hospitals are really “fix it” places – if there is nothing that can be fixed, we should not be sending our elderly there.


We keep hearing that we live in a death denying society, but mostly, I hear a sigh of relief when I raise the subject. People do want to live with certainty about the end of theirs or their loved one’s life. It has not been hard to arrive at the conclusion that we are the problem, we the health industry, we the clinicians. We are the death denying industry, we are the death denying profession and until we stand up and lead the way on this subject, our society will continue to suffer.


Where do you start? Talk about life. Talk about what there is, but be honest and realistic about prognosis. Then talk about suffering and how you will make sure it is minimised so that life is maximised. Then talk to the family, help them provide the support that is so vital to good EOL care. Dying is the third important phase of life after all. The quality of a nation’s health system care can best be measured by how well its citizens die.

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