He who has a Why to live for can bear almost any How
It is not easy to get bored when you hear about the secrets to a better life every day.
Palliative medicine is like being there at the end of a marathon. You get to hear about how great the beginning was, how tough the middle has been but best of all you get to ensure that the finish is what people hoped for.
Because at the end you can make the biggest difference – and you only have one chance to do so.
Peter was referred to us when he was in his 80s and by then he had end-stage idiopathic pulmonary fibrosis and was sick of doctors. He was tired of re-admission after re-admission, appointments galore, emergency presentations, X-rays and ABGs. His breathing wasn’t getting any better, in fact it was getting worse.
He wasn’t scared of dying – I know because I asked him.
But palliative medicine isn’t just about dying it’s just as much about enabling people to live better.
Every day, I hear and see incredible relationships and heart-warming episodes that propel humanity into the divine, for example, Edna, who looks as though she may fall over if you accidentally coughed on her, sits at home hooked up to her oxygen, as frail as a whisper. But as she sits on her chair all day long, with the front door open to caring neighbours (who recently popped in to make her tea and toast), she is knitting beanies for brain-cancer victims and tells me about her father who ran a grocery store in Newtown many moons ago. She almost cried with happiness when I told her I didn’t think she needed to take those 20 tablets anymore.
Peter on the other hand, whose breathlessness was beyond redemption, was prescribed a handheld fan, a breathlessness plan and some morphine (these interventions like many in palliative care are evidence-based). Within a day, he felt so much better he was able to partake in his favourite activity – talking!
Something so simple was a life-changing intervention.
And boy did he have some stories to tell – the most important of which he advised me late one Tuesday afternoon – as he held my hand with tears in our eyes after I told him his time was short – was to always be gracious.
Learning about what makes life fulfilling and wholesome is about the best job perk I can think of.
Asking patients about their final days is like opening a treasure chest – usually it is an incredibly rewarding feat where you have a chance to glimpse into someone else’s life and see what is valued – sometimes it is a fascinating incursion about how death for some is unthinkable. Always, it provides you with the opportunity to provide solace and care that leaves an unshakable feeling of doing something worthwhile.
Sometimes, this job is really tough, especially when someone seems to have had their life cut short unfairly, they have a terrible ailment, such as motor neuron disease or they remind you far too much of your husband or mum or your dad. But even from these people there are lessons to be had, as when I cared for Sarah and it was as if I was looking into a mirror, terribly sad.
Existential distress is one of the most challenging symptoms you will face and there is no pill you can prescribe for a spiritual crisis. Instead, when someone is asking “why me?” or crying that they “want to die” sometimes just being there in supportive silence is the best you can do. There will always be a large supportive multi-disciplinary team around you as well.
You also use what you learnt at medical school and basic physicians training, but you use your knowledge of pathophysiology and pharmacology differently. For example, I think it takes more courage and expertise to de-prescribe rather than prescribe. It takes more courage to not investigate something than to order more scans. There is a feeling within us all to save people and this can be overwhelming but when you see how much better off some patients are for not being over-treated and instead being at home with their families, the decisions become easier. Of course, you are not always doing this – most of our patients for example are still receiving “active” treatment and still need hospital admissions.
But your influence makes those last months, weeks, days and hours better and we know this because multiple trials have demonstrated that patients who receive palliative care have a better quality of life. In fact, a landmark trial for palliative medicine showed that compared to patients receiving aggressive medical management, patients with lung cancer who had early palliative care not only lived better but actually, unexpectedly, lived longer (1)!
As Doctors we should be asking less, “What is the matter with you?” and more, “What matters to you?”
– Don Berwick
Practicing palliative medicine can take place in a palliative care unit (not just a hospice as 70 per cent of patients are admitted for symptom management and are discharged), within a tertiary hospital often as a consult service and in people’s homes. GPs and BPTs can undertake palliative medicine training via the RACP. Training is three years and rotations are every six months.
By 2021 there will be four million Australians over the age of 65 years. They will likely have about four chronic diseases each and die from heart disease, lung disease, dementia or cancer. Some studies show as little as 17 per cent of doctors know about their patient’s death-related preferences, most doctors do not undertake advanced-care planning and most doctors do not even talk to their patients about prognosis. In one study, only 5 per cent of patients with cancer had a completely accurate understanding of their illness.
With or without physician-assisted suicide this has to change. And baby-boomers will demand a change; palliative medicine is perfectly placed to ensure people with chronic incurable disease get the best medical management that is focused on making their lives better but maybe not longer. It manages pain, anxiety, breathlessness, nausea, fatigue, families and much more and it does so from a place of empathy.
Palliative medicine is taking up its place to work alongside specialities like oncology, geriatrics, renal, respiratory and cardiology so that patients are being referred earlier in their disease trajectories. Renal supportive clinics exist where renal physicians and palliative medicine coordinate care for patients who are stopping dialysis or who do not want to begin dialysis. There is no reason these clinics won’t soon exist for heart failure, COPD, dementia, etc.
Palliative medicine can be misunderstood, unfairly judged and put down upon by the medical hierarchy – and sometimes I feel this acutely.
But then I remember, I’m not doing this for prestige or even money and the reward I get from patients is actually priceless in itself. And yes, you have to be patient, authentic, empathetic, but you also have to be a bloody good clinician – because often you will not have X-rays, blood results or CT scans at your fingertips and you will have to use your clinical judgment alone to diagnose sepsis, pleural effusions, ascites, bowel obstructions, and spinal cord compressions to name a few.
Just remember not everyone needs a heart transplant but everyone will eventually die and everyone wants to do so free from pain and suffering.
The evidence base for palliative care is growing and so is the demand. If you want to do this speciality I suggest you seek a rotation, start some research, undertake a communications course or contact a palliative medicine physician – chances are they will be delighted to hear from you.
A day in the life of a palliative medicine trainee is never dull, often people die, overwhelmingly people are grateful, you hear the most wonderful stories and most of all when you go home (usually on time) – you can’t help thinking how lucky am I?
Non, je ne regrette rien
– Edith Piaf
Please note names have been changed to protect patients’ privacy.