My recent posts on suffering have examined three spiritual traditions—Stoicism, Buddhism, and Christianity—on how they might prepare a terminal cancer patient to cope with suffering. This post discusses how palliative care might help you suffer less. No one should suffer more than they have to! I’m not providing medical advice; instead, my goal is to introduce you to palliative care because, in my experience, there are many misconceptions about it.
Palliative care
All the medical and caring professions work to reduce suffering. Most do this by attempting to fix a pathological process that causes suffering. This is wonderful when it works but sometimes attempts to cure do not relieve all the patient’s suffering. Worse, some of us have chronic or terminal conditions for which there is no cure. Palliative care is a medical service dedicated to reducing suffering instead of treating the pathological processes that cause it.
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. (American Academy of Hospice and Palliative Medicine (AAHPM))
In some cancer centres, specially trained doctors, nurses, social workers, and other specialists staff a palliative care team. In other centres, they may not have a designated palliative care team, but palliative specialists will be on staff. I list some of these professionals and their services below. They work alongside a patient’s other healthcare providers to help manage the patient’s symptoms.
What Kinds of Care Can You Get from a Palliative Care Service?
Pain Management: Pain is a highly complex and subjective experience that many biological, psychological, and social factors can influence. Cancer causes lots of pain; therefore, pain management is critical in cancer care. Pain care can include medical treatments such as medications or injections. The use of these medications is complex because of how they interact with other drugs and the risks of addiction. Pain can also be treated through physical therapies, psychological therapies like cognitive-behavioural therapy, and complementary and alternative treatments such as acupuncture. I have been fortunate to work with a gifted pain specialist who has improved the quality of my life.
Addiction medicine: Unfortunately, addiction is a severe risk to cancer patients. If you find that you are managing your pain by drinking vodka and cranberry juice at 9:30 AM, you are on a perilous path. Addiction is a complex disease that affects the brain and behaviour. It involves genetic, environmental, and psychological factors and requires specialized knowledge to treat effectively.
Nutritional Support: Cancer can make it difficult for patients to eat and drink, leading to malnutrition and dehydration. A dietitian can advise on foods that are easier to swallow and high in nutritional value.
Physical and Occupational Therapy: Therapists can provide techniques to improve mobility, reduce pain, and manage daily activities more effectively.
Speech and Language Therapy: After throat cancer treatment, patients may need help from speech and language therapists to regain everyday speech and swallowing.
Psychological and Social Support: Psychologists, social workers, or counselors can provide emotional support. Support groups can also provide a space for patients to share their experiences and learn from others going through similar situations.
End-of-Life Planning: If cancer is advanced and treatments do not have the desired effects, discussions about end-of-life planning may be appropriate.
What Does It Mean to Get Palliative Care?
The language here is confusing to patients and causes problems. I know three ways to get palliative care: a) you can receive palliative care on an as-needed supplement to curative cancer care, b) you can be on a palliative care protocol, and c) you can be in hospice care.
Receiving Supplementary Palliative Care
The first is simply getting care as a supplement to whatever other cancer care you happen to be receiving. I encounter patients and doctors who believe that palliative care is what patients get only after giving up on a cure. This is a serious error: giving up on seeking a cure can be a reason to seek palliative care, but receiving both palliative and curative care is perfectly reasonable. The AAHPM says, “Palliative care should be provided along with other medical treatments,” including ongoing efforts to cure a patient’s cancer.
Being on a Palliative Care Protocol
This is my current situation. I am getting chemotherapy for throat cancer, but the goal is not to cure me. Everyone would be thrilled if I were cured, but my oncology team thinks that is unlikely. The goal is to slow the growth of my tumour.
Importantly, going onto a palliative care protocol does not mean the patient is giving up life expectancy in return for comfort or quality of life. A recent meta-analysis found that
From 2,307 records, we identified nine studies for review, including five high-quality studies. In the three high-quality studies with long-term survival data (n = 646), patients randomized to outpatient specialty palliative care had a 14% absolute increase in 1-year survival relative to controls (56% vs. 42%, p < .001). The survival advantage was also observed at 6, 9, 15, and 18 months, and median survival was 4.56 months longer (14.55 vs. 9.99 months). In the five high-quality studies with quality-of-life data (n = 1,398), outpatient specialty palliative care improved quality-of-life relative to controls (g = .18, p < .001), including for physical and psychological measures.
That means that patients with advanced cancer randomized to receive outpatient specialty palliative care lived longer and had better quality of life. What the patient is giving up is interventions that are designed to cure his cancer.
Hospice Care
Palliative care and hospice care are often confused. Hospice care is a subset of palliative care.
Hospice is palliative care for patients in their last year of life. Hospice care can be provided in patients’ homes, hospice centers, hospitals, long-term care facilities, or wherever a patient resides. (AAHPM)
The critical point is that you can receive palliative care without entering hospice care.
Conclusion
Why is it necessary to have palliative care specialists? Why isn’t standard oncological care good enough?
Well, in many cases, your oncologist can successfully manage your symptoms. However, based on my and other patients’ experience, I believe that sometimes oncologists do not and cannot do an adequate job. This is not because oncologists are indifferent to patient suffering; it’s a problem caused by the system and the situation. First, pain medicine and other forms of palliative care are complex and fast-moving medical disciplines. For example, many drugs are in use and have complex interactions with other treatments patients may receive. Oncologists may not be up-to-date because they already have fast-moving clinical specialties to keep up with.
Second, getting an accurate read of a patient’s well-being requires time with the patient. In our province, at least, oncologists have large caseloads that force them to have short visits. However, it takes time to understand why patients are suffering. Many patients–including me–make things more challenging by underreporting their pain. If you ask me how I’m doing, I will always say, “Things are going well.” It’s hard to get me to admit that I am suffering; it’s how I was raised.
You have to know about palliative care services because you will not necessarily get them unless you ask. Your principal doctor may notice that you have a problem she can’t resolve and refer you for care. That’s great. But if things aren’t working for you, you may need to ask for a referral. I have trouble asking; I don’t want to take more than my share. But severe pain undermines my care and makes me harder to live with, so I have learned to ask.
Hi Bill, Excellent explanation of palliative care and its role in treatment. I have one question--I have always understood palliative care as something that can include curative interventions, so I am a little confused about your last sentence in the Palliative Care Protocol section. Is this a US/Canada thing, where different rules apply or the same term is used a little differently, or am I misunderstanding something about palliative care? Or the definition of curative interventions? In the pancreatic cancer program I work for, we have articles that promote palliative care as part of active treatment. My reading of the NIH article about palliative and hospice care is similar: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care