What constitutes good care for cancer patients with terminal diagnoses? In this post, I want to speak to fellow cancer patients and their families about care for the body. In the next post, care for the soul.
I’ll start by expressing my gratitude to the doctors, nurses, and staff caring for me. In hindsight, there were ways my care could have been better. But we must distinguish between error and negligence. Clinicians should be culpable for negligence but not for error. Cancer is relentless, and patients vary wildly in their responses to treatment. In treatment-resistant cases like mine, it is impossible not to make errors. Everyone who has treated me has been fully committed to my well-being, despite the exceptional stress of practicing medicine during a pandemic.
So, what are the elements of good care?
Good care minimizes the economic stress and paperwork burden on the patient. It is essential to do this because a dying person will also have non-medical administrative work to settle their affairs. They do not tell you that dying involves many meetings and papers to sign, but it does.
I have experienced extended periods of grave illness in the US (cardiovascular problems) and Canada (cancer). In the US, despite my employer’s supposedly excellent insurance, I had to spend lots of time negotiating who could care for me and how much I had to pay out of pocket. Canadian healthcare has severe problems with waiting lists and a lack of access to some medications. But for almost everything I’ve needed, I’ve had to show a receptionist my health card. That’s it.
You can’t choose the country you live in, so why discuss health care financing? I mention this because, for Americans, the administrative and financial burden of end-of-life care is part of what is at stake in the struggle for universal health care. Canadians must continue to resist the efforts to privatize our care.
Next, I want to raise three points about the kinds of care a cancer centre should offer. Professionals will find nothing new in these points: these are the aspirations of all cancer programs. How will this benefit you as a patient? If you believe something is missing in your care, I hope this will help you ask for it.
First, many patients need pain and symptom management beyond what most oncologists can provide. I have benefited enormously from working with a palliative care specialist. I wish I had started working with palliative care before severe pain became a health emergency. Cancer of the tongue plays havoc with my ability to swallow. Through the palliative care service, I am working with a specialist on just that problem.
The most important person who will care for you is you. Everything will worsen if you are in chronic pain that prevents you from applying good self-care. Talk to your doctor if you sense that more could be done about your pain or other symptoms.
Second, watch your mood, and don’t hesitate to seek mental health care. You don’t need to be in a mental health crisis to benefit from care. There are low-intensity treatments for many problems, such as cognitive behaviour therapy (CBT) for anxiety or counselling about issues in your relationships and family. Are you afraid of needles? Bad news: cancer requires endless needle sticks. But needle phobias are treatable using CBT or exposure therapy.
These issues will not be your oncologist’s priority; she will focus on the cancer. Talk to your doctor if you experience a crash in your mood, uncontrollable fear and anxiety, or an inability to mobilize the energy to face the day.
Finally, you need a collaborative team of caregivers who communicate well with you and each other. Many cancers require more than one kind of intervention (radiation, surgery, or medication). If so, you will need more than one doctor, and those doctors must work together. You are facing life and death choices; try to get as many expert perspectives as you can. And all your caregivers need to be on the same page.
What can you do as a patient? Understand that every day, every doctor is blasted by a firehose of messages about their patients. If you receive care from more than one specialist, make sure that you update each of them about what is happening in your treatment. By talking to Dr. X about your care from Dr. Y, you’ll often discover that you misunderstood something. Dr. X can clarify what’s going on. And sometimes, you’ll find that Dr. X was unaware of what Dr. Y has been thinking or doing.
What a kind thought, Brian. Likewise, writing that American Psychologist article with you was a highlight of my career.
You write beautifully, Bill. You always have. One of the great pleasures of my professional life was the opportunity to write with you.