Palliative care – Never mind the money

An open letter by Dr Margie Venter

I suppose it happens to everyone. That question that starts the conversation – ‘so what do you do?’ But unfortunately, oncology is quite a gloomy conversation starter.

Although it gets everyone talking, I get bored when it evolves into an epidemiological discussion like: “What do you think – is the incidence on the rise?” What I am curious about, however, is the experience of oncology within the realm of palliative care in a non-curative setting.

We don’t seem to have a very encouraging reputation in this regard, which in some ways I think is unfair. Often, it’s the ones left behind who are telling the story and are biased because they are grieving. Survivors would tell a different story, but then again, that really is a different story. The last days of living with cancer will hopefully be a tale of the impact of the cancer and not its treatment. Sometimes lay people get that mixed up; to them it is all one blurry reality, almost like a nightmare. Still, it does warrant some reflection.

Having taken a step back from clinical practice and recently losing my father to non-small cell lung cancer, this has become a nagging question for me – what are we trying to accomplish with chemo/radiation/chemoradiation with palliative intent and are we achieving what we set out to?

If I say that I am improving quality of life, have I given enough thought to what that actually means? Have I taken into account that what I might consider good quality care sounds dreadful to another individual? Some don’t mind drinking Tassenberg – which is well priced! Do I know what the patient prefers to drink? Perhaps if they are thirsty, water might do the trick? Or have I considered that they might not be thirsty at all. Do we spend enough time considering medical management of symptoms as an option, as opposed to adding oncological management into the mix?

When patients have grade 2 side effects to treatment, do we consider it acceptable and continue? Are we sure that the patient accepts those side effects and is not just resigned to them? In terms of quality of life, is that good enough in the palliative setting? I remember a handful of patients where the treatment massively improved their quality of life and the side effects were non-existent. Mostly, however, the slight benefit of cancer symptom relief was offset by fatigue and other slight side effects of treatment. If ruthlessly judged, I am not sure if I was achieving as much as I had hoped. But stopping treatment is difficult and all is easier said in retrospect.

If we say we are extending life, have we considered why and whether it is desired? My father was bedridden for two months; in and out of coherence, before he died. When I was bemoaning the fact that it was taking so long, especially since he was completely at peace with going, a wise friend of his said: “Well, considering the fact that he has been on this earth for almost 70 years, two months is not such a long time to depart from it.” This also made me wonder. If we have been on this earth for 40, 50, 80 years, what makes us take treatment that will keep us here for an extra three, four, or 22 months?

What makes that kind of treatment so worthwhile? Would I, if confronted with the reality of cancer, be able to decide that the time I have left is better spent living and not interrupted by visits to the clinic for treatment? Would I, if confronted with the reality of a terminal illness such as cancer, be able to see the wood for the trees – the bigger picture and decide that the time that I have left is probably better spent otherwise and not to be interrupted by visits to the clinic for treatment? I believe this to be a question every oncologist should figure out for himself first, to ensure that one honestly and authentically participates in this conversation around palliative treatment with a patient. Many articles have been written about the phenomenon of doctors choosing differently for themselves than they would for their patients. Usually those choices are much more conservative. We have the benefit of knowing the limits of medicine.

The biggest hurdle in all of this, I think, is this thing called hope. Patients insist on it, they Google it and they believe in it. Oncologists have stories of outliers that make them nod their heads, even if with a raised eyebrow, instead of explaining hope as the lottery ticket that it is. Hope is not, however, what the terminal cancer patient needs.

DG Meyers, critic and literary historian, who died of metastatic prostate cancer last year, wrote a few brilliant articles on the subject of living with cancer. In one article, titled The Mercy of Sickness before Death, he writes: Man says, “I’ve been diagnosed with terminal cancer, but I am going to fight it with everything I’ve got.” “My money’s on the cancer,” his friend says. Find me that friend. When it is incurable, as mine is, cancer always wins in the end, but no one – I mean, no one – wants to hear any such thing. The preferred message in our culture is the sentimental one of hope. Hope is not, however, what the terminal cancer patient needs. Even if you believe in miracles, you cannot hope for one – not the way you hope the car’s skid comes to a stop before the cliff’s edge.

I am not suggesting that there is no place for chemotherapy or radiotherapy in palliative care. My father had a good two months after five fractions of radiation to his chest. And there are many other examples of even more radical treatment being meaningful. What I am wondering is whether honest and skillful discussion between patients, families and oncologists might give patients the opportunity to bail out of the active treatment arm for earlier referral to hospice-type support with the focus on a more meaningful, mindful end-of-life period. The focus needs to be, not on whether they want treatment or not, but what is important to them under the circumstances and how best to achieve those goals.

Dr Susan Block, a palliative-care specialist and recognised pioneer in training doctors in managing end-of-life issues with patients and their families says: “A family meeting is a procedure and it requires no less skill than performing an operation. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and possibilities of medicine is a process, not an epiphany.”

The question is – how do we take responsibility for this task within the realities of restricted time, lack of specific training and old habits?