By: Beth Hutchason, MN, ARNP
What is palliative care?
Okay, let’s start with a very frequent question:
How do you pronounce this anyway? It is pronounced “PAL-ya-tive,” not “PALE-ee-ah-tive.” Congratulations! You are now on your way.
Palliative care is a type of care unknown to more than two-thirds of U.S. residents. Worldwide, 40 million people need palliative care each year, and only 14% receive it. This is a terrible shame, as palliative care is focused on the individual and their family. Almost all of us will benefit from its use at some point in our lives. These programs seek to provide what we all clamor for in our healthcare: control and choices.
Palliative care is not hospice care; it is focused on anyone with serious illness regardless of their prognosis and choices for care. Unlike with hospice, people can receive full aggressive treatment. Hospice is an intense version of palliative care for those at high risk of dying within six months and who wish to forgo aggressive management of their disease(s). Wonder if someone is appropriate for hospice or not? Ask their healthcare provider if they would be surprised if the person passed away in the next six months due to their condition. Hard to ask? Yes. Hard to hear the answer? Maybe. Importance of knowing the truth? Immeasurable.
What are the benefits of this type of care?
Now that we’ve talked about what palliative care is, let’s discuss some benefits of the benefits of this type of care:
Increased satisfaction with healthcare. People are living longer with multiple, often serious, illnesses. Their care is complex and unfortunately, our healthcare system is fragmented and exists in silos. Every specialist is focused on one thing: the heart, the skin nodule, the brain. Sometimes we forget to look at the bigger picture, the person as a whole. The one living with all these concerns piled one atop the other. The coordination of these different types of care is not always present to ensure that the individual’s goals of their care are being met. Unsurprisingly, people are more satisfied with their care when they are consulted, informed, and partners in decision making. Palliative care provides an avenue to ensure that care is coordinated and focused upon the person’s goals, which increases satisfaction dramatically.
Reduced hospital use. Palliative care has been proven to reduce hospital admissions (by 50%), readmissions (by 48%), and emergency department visits (by 35%). This makes patients happier and reduces overall healthcare costs, a win-win situation!
Symptom management. Palliative care professionals excel at controlling and managing symptoms. This is a frequent reason that people are referred for their services. They will also assess the reasons for the symptom and discuss their meaning. For example, when we sprain an ankle, it can hurt a lot, but there is little secondary meaning; we got hurt tripping over the dog, and it will get better. On the other hand, if we have cancer and our pain worsens, it may mean that the cancer is worse or we are dying. And we are not ready. Pain can be intensified by our feelings and beliefs about death. We call this existential pain. No pain medicine can heal this, but talking to a palliative provider or a spiritual leader may help this pain immensely.
Assistance in documenting your wishes for care. It is essential to talk about choices, but this is useless without legally valid documentation and communication with key people. Living wills, durable powers of attorney and POLST forms are the way to accomplish this. The time to discuss these advance directives is long before you need them when you have time to think about your choices and discuss these with people you trust. There are free forms available online, but it is strongly encouraged that you review these with a knowledgeable provider or an attorney, as their implications are significant.
Control. The primary advantage of palliative care is putting the focus of care back where it should have been all along: on the person with the plastic bar-coded wristband and back-tied gown. Has anyone asked the individual what they want for their care? What are their priorities? Hopes? Fears? Goals? Understand your unique health situation in a detailed, personalized manner. Understand your care options and the pros and cons of each—to make the best choice for yourself. Then, these choices can be communicated to the care team, and you are the one charting the course ahead for your healthcare.
So, if you are thinking palliative care may be helpful to you or someone that you love, ask. More than 83% of US hospitals with over 50 beds have palliative programs. Outside of the hospital, contact a local hospice program to see if they have home palliative care available in your area.
Beth Hutchason has been a registered nurse for 34 years and a nurse practitioner for 26 of those years. She has spent the past 14 years doing palliative care, a branch of medicine focused on improvement in quality of life and relief of suffering. During these years, she has had the opportunity to interact with many hundreds of patients with dementia and their families. They have taught her a great deal, which she hopes to share. She lives with her husband David, beloved dogs Katya and Benson, and about 60,000 largely unnamed bees in Poulsbo, WA.
Center to Advance Palliative Care. The Value of Palliative Care. Accessed April 20, 2022. https://www.capc.org/the-case-for-palliative-care/
The Value of Palliative Care. Accessed April 20, 2022. CAPC Releases Its ‘Growth of Palliative Care in U.S. Hospitals: 2022 Snapshot.’ Accessed April 20, 2022. https://www.capc.org/blog/capc-releases-its-growth-of-palliative-care-in-us-hospitals-2022-snapshot/
Knowledge of Palliative Care among American Adults: 2018 Health Information National Trends Survey. Accessed April 20, 2022. https://www.jpsmjournal.com/article/S0885-3924(19)30131-9/fulltext
PatientEngagementHIT. Palliative Care Helps Patient Satisfaction during Major Illness. Accessed April 29, 2022. https://patientengagementhit.com/news/palliative-care-helps-patient-satisfaction-during-major-illness
World Health Organization: Palliative Care. Accessed April 20, 2022.