What do you think palliative care brings to the table, especially when a patient is already seeing so many doctors?
I have become very passionate about the value that palliative care can bring to patients and their families who have to deal with serious illness. Much of this is based on clear, compassionate communication. There is so much to deal with during an oncology consultation - for example: the diagnosis itself, treatment options, possible side-effects and outcomes. It is almost impossible to be sure that patients really understand what their diagnosis it is about and what they can expect. The information is also given at a time when people are often very stressed, so that only half of the information sinks in. A palliative care consultation offers another opportunity to work through and understand all this complex medical information. Decisions are also approached from a slightly different angle. What I mean by this is, time is given to understanding what each patient values in life, what they fear, what they wish for, what they are willing to give up in exchange for extra time and what not, and what they are fighting for, if you want to use the battle metaphor….and then making sure that as far as possible, these values are aligned with the treatment being offered.
This is also a space of great uncertainty. Is the treatment going to work? Might I be the outlier with exceptional outcomes to my treatment? The answers to these questions are ever more difficult, what with the host of new treatments that are now available on the market. Palliative care intends to help you navigate this uncertainty, hoping for the best but also planning, with you, for the worst in case things do not work out as one had hoped. As far as possible I want to help avoid people saying “Had I only known, I would have….” at the end. Instead I would want them to say “Well, I did it my way!”. I have found that mostly, even though these are difficult conversations to have (for the patient and the doctor!), they in fact do not increase anxiety or destroy hope, they give the comfort that whatever the outcome, there will be support. And there is a plan in place.
Apart from informational needs, palliative care focuses very much on symptoms, be it from the treatment or the disease itself. Pain and fatigue are two big ones that take away quality of life, but there is also nausea, constipation or diarrhoea, sleep problems and so on. So while I leave the treating of the cancer to the oncologist or your chronic obstructive airways disease to your physician, I spend time treating the person and his/her symptoms.
Is palliative care new?
Not at all, it has been around for some time but has unfortunately been associated and confused with end-of-life care only, meaning that most people access this crucial support system too late in their journey.
Is there evidence that palliative care is helpful?
Absolutely. In recent years there have been a number of studies, particularly in cancer patients, that show that people live better, with less symptoms such as pain, depression and anxiety, that their informational needs are better met and that there is overall greater satisfaction with the care they receive.
Some people are worried that they might not live as long if they choose to access palliative care. This has been proven to be incorrect. In fact - quite the contrary. It is not an either or decision, you can receive treatment for your disease and benefit from palliative care.
It even seems to lead to more cost-effective care, which we have to consider if we want a sustainable healthcare system.
Big international cancer organizations such as ASCO and the NCCN in the USA, and ESMO in Europe, have called for the integration of palliative care and oncology care, claiming this to be best practice.
Does accessing palliative care imply ‘giving up’?
Definitely NO! Palliative care can be given with any treatment aimed at curing or controlling your disease. Some experts in the USA have compared the cancer journey to a car trip and including palliative care in this journey means making sure it is as comfortable as possible and that you have planned for all eventualities. Even if you end up choosing only palliative care and no active treatment for your disease, that still does not mean giving up hope or stopping the fight - the question is rather what are you fighting or hoping for? I believe there will always be something of value in this kind of care.
Why are you so interested in palliative care?
I suppose because I have had personal experience. Both my parents were diagnosed with cancer and that triggered my interest in cancer care and treatment. I then also realized the ways in which it impacted on the person’s life and that of their family, knowing that as doctors we have a role to play in more than just treating the cancer. My parents were both educated people, but were frequently overwhelmed with all the information they received, and I know it gave them comfort to be able to bounce it all off me when trying to make sense of it all. The other thing was to help with the little (and sometimes bigger) niggles of pain and nausea and shortness of breath. But that is sometimes a lot to expect from one doctor and so I think it is more sensible, for all involved, to work as a team.
And then in the end, when the cancer was no longer being treated, we had a plan, and my parents could be supported and cared for at home. It was very meaningful.
And all that is what palliative care does. It makes so much sense to me.