Palliative Care? No Thanks
It is socially awkward when I am asked what my occupation is. It is never enough to say “doctor” anymore and once I mention “Palliative care specialist”, I can expect a few responses.
There’s always The Look, which could be a) bafflement (what’s Palliative care?); b) sympathy (it must be so sad); or c) sympathy mixed with admiration (that is so noble). Look A usually develops into B or C after I explain what it is that I do. After that, it’s 50-50 whether the conversation peters out.
Palliative care is often linked with death and dying, and as human beings are naturally death avoidant, they try to steer clear even if they do not know anything about Palliative care. We who work in the field understand it is all about LIVING the best and most meaningful life possible.
But the “bad rep” is hard to dispel, despite years of advocacy and awareness efforts. It remains an uphill battle, not least because of the myths and misperceptions that abound. Here are some of the more common ones:
PALLIATIVE CARE MEANS I AM DYING SOON
True for some people who are referred to us very late in their disease course, but it does not have to be, as palliative care can be given at any age and any stage, alongside treatment to control the disease. In cancer, palliative care can come in with anti-cancer treatment like chemotherapy, even at the point of diagnosis.
PALLIATIVE CARE IS DEPRESSING
A bereaved relative recently wrote in a thank you email “To us, your work appears depressing and we salute you for soldiering on.” That I can understand – as a loved one of someone who is seriously ill, or terminally ill, it is natural and appropriate to feel sadness, grief, helplessness, etc.. But as a healthcare professional facing sad situations, it is important to have awareness of one’s own responses – thoughts, feelings, bodily reactions – because if we find ourselves badly affected, we are the ones having the problem, not the patient.
PALLIATIVE CARE PROFESSIONALS ARE NOBLE
We are fallible human beings like everyone else. Where we might be different from the majority is that we accept that our patients will die, that we enter into each patient/family relationship knowing that separation is inevitable. That isn’t the point. The point is, how do we create the conditions so that people can live in the most meaningful way in the time left?
White Water Rafting and Palliative Care
By Bruce Dawe
If I had understood (when down the river
you and I went swirling in that boat)
that there were those who knew the ways of water
and how to use oars to keep afloat
– I might have been less deafened by the worry,
less stunned by thoughts of what lay up ahead
(the rocks, the darkness threatening to capsize daily),
if I had only realised instead
that help was all around me for the asking
– I never asked, and therefore never knew
that such additional comfort could have helped me
in turn to be more help in comforting you.
I’d have found it easier then to simply hold you
instead of bobbing to and fro so much,
for it was you who seemed to be more tranquil
– and I who death was reaching out to touch.
If only I had had sufficient knowledge
in that white-water rafting I’d have learned
that there are those around us (with life jackets)
to whom I might have, in that turmoil, turned.
Instead, because I had not thought of rivers,
or rocks, or rapids, and gave way to fears
that seeking help might make a man less manly
and liable to betray himself with tears,
I was less useful then, as twilight deepened,
that I might well have been, had I but known:
however wild the waves that roll around us
– no one needs to live (or die) alone …
PALLIATIVE CARE IS COMPLICATED
Yes and No. It can be complicated because we deal with people, not diseases, and people are complicated. But few things help to bring clarity to priorities like a serious illness, or knowing that one’s time is limited. Palliative care, through conversations about what matters most, is often able to help patients focus on what gives them the most meaning. So in that sense, sometimes Palliative care simplifies.
PALLIATIVE CARE MEANS YOU ARE GOING TO GIVE ME MORPHINE
Only if you need it, and only if you agree with the recommendation. Same goes for any treatment.
PALLIATIVE CARE IS FOR PEOPLE WITH CANCERPalliative care is given on the basis of need, and not age, diagnosis nor timing. The modern concept of palliative care did develop around the needs of patients dying of advanced cancer, but in the last 50 years, it has evolved. People living and dying with non-cancer diseases can suffer terribly too.
PALLIATIVE CARE MEANS STOP EVERYTHING, THERE WON’T BE ANY TREATMENT
This is a common myth that was “busted” by Atul Gawande in his book “Being Mortal”. Palliative care means aligning treatment to patient goals. If the goal is quality of life, then treatments that do not work and may even disrupt one’s quality of life, should be stopped. Treatments that enhance or maintain quality of life should be started or continued. So a cancer patient on chemotherapy which is causing bad side effects would be advised to stop that particular treatment. A heart failure patient who needs diuretics to manage fluid retention would be advised to continue.
PALLIATIVE CARE IS FOR OLD PEOPLE
See above. As one of a handful of palliative care specialists who see children as well as adults, I can say with confidence that youngsters can benefit from palliative care too. The main difference is that children’s diseases may run a much longer course, and so we talk about them having “life-limiting illnesses”, meaning they may not survive until adulthood (or much beyond young adulthood). Also, in Paediatric Palliative Care, the family is an essential part of our focus of care, not just parents and siblings, but often grandparents too.
Even if the patient is an adult, Palliative care will always encompass the family in its circle of care, especially children and young adults. There are services and programmes such as Camp Simba which support children whose parents have cancer.
PALLIATIVE CARE IS HARD
Sometimes true, but not for the reasons one might think. There is never any “bread and butter” because everyone is different. We need to “bring our game” every time we see the patient, be fully present to them and their needs. We need to recognise the potential in the worst situations, and when we can and cannot, “fix” things. And we need to try and get it right the first time, because there may not be the luxury of time, nor a second chance to go over and do it again.
So there are many myths, but there is one truth. Not all of us will get cancer, or diabetes, or stroke, not all of us will have a chance to grow old. But we are all born, and we will all die. In the 21st century, that will likely be of a chronic progressive illness (or combination of illnesses) which may run a protracted course.
Many of us will experience the stress and fulfilment of caregiving, and worry about being a burden to others when our time comes. We may worry about how to cope, whether there will be pain and suffering, how to talk to the children… Palliative care is there to help with all that and more.