Palliative Care Is Having a Moment – But It’s About So Much More
It is astonishing to me as I write in mid-May that the United States has now lost nearly 87,000 people to COVID-19.1 The American Society of Clinical Oncology (ASCO) estimates that nearly 18,000 people will die from bladder cancer in 2020.2
In just 3 months, the equivalent of nearly five years’ worth of bladder cancer deaths have occurred.
Palliative care doctors are key
And the doctors who help comfort those at the end of life are palliative care doctors. They have been featured in news stories lately and have often been the doctor who has to deliver the news about how long a patient is likely to live.
But palliative care is not just for the end of life
I worry that these images and stories will reinforce the misconception that palliative care doctors treat only those who are close to death. It is true that hospice and palliative care are closely linked, and specialists related to both treat patients near the end of life.
But while hospice care includes palliative care, palliative care does not necessarily include hospice care. In other words, hospice is a sub-set of palliative care. There are clear and helpful definitions and distinctions here at the patient site of the American Academy of Hospice and Palliative Medicine (AAHPM).
What is palliative care exactly?
Per the AAHPM, palliative care “is for people of any age, and at any stage in illness, whether that illness is curable, chronic, or life-threatening.” It goes on to say “palliative care focuses on improving a patient’s quality of life by managing pain and other distressing symptoms of a serious illness. Palliative care should be provided along with other medical treatments.”3
Palliative care specialists helped my husband manage his pain
I saw palliative care doctors in action and up close when my husband had metastatic bladder cancer. He had a lot of pain and they were indescribably helpful in helping him – and by extension, me – manage that pain.
The oncology visits were often very focused – as they should be – on the cancer and how it was or wasn’t responding to treatment. Our time was spent discussing next steps and next-next steps so that we had ideas in mind for future treatments.
Pain impacted my husband's quality of life
But the problem that really impaired my husband’s quality of life was the pain from a tumor pressing on his spine. It was debilitating. The oncologists prescribed pain medications but they didn’t have time – nor the expertise – to work closely with us to get the formula just right.
If you haven’t ever needed narcotics to manage pain, you are lucky. One of the challenges with serious, ongoing pain is that striking the balance between tolerable pain and enough mental clarity to function can be very challenging. And where that balance is can shift over time, adding to the challenge.
A palliative care visit differs from other appointments
The palliative care doctors excelled at this. Just the appointment experience was so different because we sat in a pastel-colored room in comfortable armchairs and just talked about what was going well and what wasn’t. It was common for them to spend an hour or more with us.
Have you ever spent an hour with your oncologist, other than maybe when you were first diagnosed?
Palliative doctors provide comfort care. In a sense, I think of it as the old-school idea of what medicine used to be about before the extensive technology. And they do it well. Our country is facing an expected long-term shortage of them.4 Maybe as more of us understand and experience what they do, we will create a demand that medical schools will fill.
In the meantime, consider consulting a palliative care doctor if your bladder cancer is causing you significant physical or emotional suffering. They can likely help.
How long did it take to get diagnosed after your first symptom(s) appeared?