Movers and Shakers: Rebranding Palliative Care

Judge Nick Mostyn warns us at the beginning of this week’s episode of Movers and Shakers that this is one “where the laugh/moan ratio does not favour hilarity.” And I think you can hear in our voices that discussing palliative care and the legal steps we need to take before, as the judge puts it", “shuffling off this mortal coil” doesn’t exactly fill us with glee. But, as so often, brilliant guests give us a whole set of new insights into what might sound like a gloomy subject.

First up is Dr Sabrina Bajwah, a palliative care consultant at London’s King’s College Hospital, who immediately makes it clear that she is frustrated with the way her specialism is perceived. After all, before introducing her Nick Mostyn has asked us all whether we have thought about the time when we will need palliative care and received a universal '“no” - we would rather just not go there - while the judge himself goes on to describe it as “death row”.

Dr Sabrina Bajwah

But Dr Bajwah wants to make it clear that palliative care is not the same thing as end of life or hospice care. Instead, she describes it as “specialised medical care for people living with a serious illness. So this type of care is focused on providing relief from the symptoms and stress of the illness and the overall goal of the care that you receive from palliative care is to improve quality of life for both the patient and family.”

As examples of the kind of symptoms she can address she gives depression, pain, nausea and constipation, and she stresses that what she and her colleagues do is examine the patient in a holistic manner, offering care tailored to the individual.

This leaves us confused - she seems to be saying that palliative care would be an attractive option for many people with Parkinson’s, even if they were a long way from needing end of life care. So it sounds as though we should actually seek out a referral to palliative care services?

“If it was me,” says Dr Bajwah,’I would seek a referral to palliative care when my symptoms impacted my quality of life.”

“That’s all of us!” we cry - after all, it’s hard to think of a symptom which has no impact on our quality of life.

“But if I was depressed and got referred to palliative care, I’d get more depressed,” says Paul Mayhew-Archer. And Sabrina Bajwa, joking that she doesn’t always wear black as she is today, admits that her chosen specialism has an image problem.

“There have been lots of conversations about changing what we're labelled as a specialism and perhaps calling it supportive care.”

But what this appears to highlight is deficiencies in the standard treatment of Parkinson’s. The patient-centred holistic approach that Dr Bhajwa outlines is what we would all like to experience: “As well as looking after your symptoms, your physical symptoms and psychological symptoms, we do consider and talk to you about advanced care planning and thinking about what you want from your care.”

For the second element of our episode about planning for our demise, we need legal advice - and we go straight to the top with a judge, Lucy Theis or rather Mrs Justice Theis, the President of the Court of Protection. She explains that it is her job to make welfare and financial decisions for people who have lost their mental capacity.

But the clear message is that you don’t need to end up in her court if you take some simple measures, which her fellow (now retired) judge Nick Mostyn outlines:

• Make a will

• Give Lasting Power of Attorney to a trusted relative or friend

• Make an “Advance Decision”, once known as a Living Will

Lucy Theis urges everyone not to delay in making a will: “To make arrangements is extremely important because it provides certainty, it reduces the risk of conflict, and it means that everybody is clear.”

And while you are of reasonably sound mind it makes sense to give Lasting Power of Attorney to your nearest and dearest. These come in two flavours, financial and health, and they mean that when you do become incapable of making decisions it is simple for whoever has been granted power of attorney to take over.

But there is one decision that you might want to reserve for yourself - whether you are to be kept alive artificially at the end. This is where the Advance Decision , once known as a Living Will, comes in.

“You can in the advance decision specify that treatment you might be receiving should be withheld or withdrawn,” explains Nick Mostyn. “And if the doctors do that they're exposed to no liability at all. This is a decision that you make - not the Court of Protection, not your attorney - that you are making while you have capacity, to take effect when you've lost capacity.”

“I think it is difficult, but liberating to have those discussions sooner rather than later,” says Mrs Justice Theis. That seems to apply to discussions about palliative care as well as getting your legal affairs sorted out. Indeed, if we have learned anything during more than thirty episodes of Movers and Shakers it is that it is good to talk about Parkinson’s.