Distinguishing between sadness and depression at the end of life: a significant challenge tackled by a leader in palliative care
Early in his palliative care career, Professor Gregory Crawford had a young patient with depression, whose experience affected him deeply. Now a professor of palliative medicine within the discipline of medicine at the University of Adelaide, he gives an insight into how his career unfolded, and the challenges of treating mental health issues at the end of life.
Professor Crawford is chairman of Palliative Care SA, a senior consultant in palliative medicine and the director of research and education at the Northern Adelaide Palliative Service, and president-elect of the Australasian Chapter of Palliative Medicine for the Royal Australian College of Physicians. He is also on the organising committee for next week’s Australian Palliative Care Conference in Adelaide (6-8 September 2017).
How did your career path wind its way into palliative care?
I spent 12 years as a GP before moving into full-time palliative care work 20 years ago. I was one of three GPs on Kangaroo Island, SA. We had 4000 locals and 100,000 tourists a year and we did it all; delivering babies, caring for dying people, trauma, end-of-life care, drivers’ licence renewals and marriage guidance. We had visiting specialists and we gave anaesthetics so people could have operations locally.
I studied a master’s degree which focussed on palliative care before making it my specialty. At that time there was no formal process, so I was grandfathered into the chapter of palliative medicine (which is kind of like being adopted into the speciality, based on the strength of my knowledge and experience, rather than passing exams).
I became interested in the psychological issues of coping and so I started working on a Doctorate of Medicine and a thesis titled ‘Depression in palliative care in Australia: identification and assessment’. I worked on the thesis on weekends and during my spare time, so it took me seven years. After five years, my wife became very determined that I was going to finish it, as it had consumed so much of our time. I worked on a series of studies which looked at the prevalence of depression symptoms and other psychological issues in palliative care.
What inspired you to focus on mental health?
One of the motivators was that I looked after a 15-year-old girl who had a malignancy who looked like she was dying. I was working as the clinical head of palliative care at a hospital in Adelaide, and she was referred to us on the basis that she only had weeks to live. She had difficult pain to manage and other symptoms that led to her becoming more and more withdrawn.
I was slow to recognise that she was depressed and I found it hard to find advice and support about to manage it.
I looked in the literature and talked to psychiatrists and other colleagues. I ended up changing her antidepressants and she made a miraculous improvement, both physically and psychologically. She improved and lived for another 12 months. She had serious, progressive disease but her physical function and her ability to interact and live improved. She went off on a holiday, achieved some other things on her wish list and made lots of other nice memories for her family.
She died at home, supported by our palliative care service and her GP, and we had support from the paediatric palliative care service.
It showed me that sometimes the symptoms of impending death and the symptoms of advanced depression can look very much the same. I felt a bit like I had failed, having taken so long to recognise her depression and then act on it, which made me determined to learn more about depression in this context. It drove me to try and understand more about psychological illness.
Is it a challenge distinguishing between sadness, grief and depression when someone is dying?
There has been a large amount of research in this area, but it is still very difficult to really determine what is a normal reaction to what is happening, like sadness, and what is an abnormal reaction, like a major depressive illness.
Not everybody at the end of life is depressed and you wouldn’t want to make a diagnosis that isn’t there. Equally, there is still a large stigma in our society associated with being diagnosed with a mental illness, and another challenge is that the treatments are not necessarily simple. Most are oral medications that have interactions and side effects and they are slow to make a difference.
Talking therapies are the other mainstream part of treatment, so there may be value in engaging with the patient and trying to lay down new ways of thinking with cognitive behavioural therapy. But many patients don’t have the energy or cognitive capacity to participate in these activities in a meaningful way.
Then other strategies might be helpful, like relationship therapy, massage therapy, dignity therapy and a life review – they can help people make some sense or meaning about their current situation.
The bottom line, however, is that this isn’t easy. I am confident that I can make a significant difference to 90% of people who turn up to me with pain, but I don’t have the same confidence with depression or other psychological issues. They are harder to treat and there are fewer treatment options.
What happens if depression isn’t diagnosed?
The implications of not diagnosing are that patients have increasing suffering and may not be getting the best treatment. They may be losing an opportunity to have more time or meaningful interaction with people around them. For their families, this can be a very large trauma; to not understand why somebody has turned their back on them or why they might be rejecting relationships, being overwhelmingly sad, or wanting to die precipitously. When triggered by depression, those responses can be quite challenging.
Are some people more likely to become depressed at the end of their lives than others?
We know that a person who has previously had a depressive illness is at much greater risk of depression when facing the end of their life.
Most people who have had an ongoing supportive relationship with a GP, psychologist or psychiatrist would want to continue to receive that support.
Our palliative care units and hospices all would want to provide psychological and psycho-social support, but there is varying access to clinicians with the skills, time and ability.
Within our specialist palliative care services we need an enhanced focus on the psychological supports available to our patients and their families. There are very few with a comprehensive psychological service that provides regular access to psychologists and counsellors.
Outside of those specialist services, we also need clinicians of all training to understand end of life and have good communication skills and have some knowledge of treating physical and psychological symptoms.
I was recently involved in caring for a relatively young person who had pre-existing schizophrenia and developed a cancer. I saw first-hand the challenge of negotiating care. There were two large teams involved – a psychiatric team, a multidisciplinary palliative care team – and this person lived in supported accommodation.
The young person’s closest support and substitute decision maker was also a client of the mental health service. This raised so many issues around capacity and autonomy. There were also major challenges around medication management, particularly in terms of opioids and trying to provide the best physical symptom control we could within the rules, regulations and concerns about the safety of all other people associated with this young person and their care.
This experience has inspired a service review so we can hopefully learn from it and improve the care available to this particularly vulnerable group.
Has your interest in psychological issues at the end of life continued?
My research interests have broadened into the psychological issues affecting doctors who work with palliative care patients. Surgeons, oncologists, palliative care doctors and doctors working in intensive care units all experience caring for dying patients and I’m interested in the impact it has on them. I’ve also been looking at palliative care patients who have had a pre-existing mental health diagnosis, and looking into end-of-life conversations and advance care in vulnerable populations in general.
I’ve been awarded an NHMRC grant to look at end-of-life issues in people with chronic disease, people from culturally and linguistically diverse backgrounds, and Indigenous backgrounds, with a view to how we develop policy in this sensitive area.
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