Have you ever talked with a palliative care specialist? Do you know what they do, or how they could help you with your cancer treatment?
What a palliative care specialist does
“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness-whatever the diagnosis.
“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”
Some issues that a palliative care specialist can help resolve
- Shortness of breath/cough
- Weight gain/loss
- Memory problems
How do we reconcile different goals?
Sometimes at the outset of care, a patient might feel like their goals aren’t being addressed, or that their goals are at offs with those of their doctor.
Here’s an example of 2 different points of view:
- A doctor sees lung cancer as the problem.
- A patient sees shortness of breath and fatigue as the problem.
Doctors are focused on healing the sick. That’s their purpose, and they usually do an exceptional job of fulfilling it. Unfortunately, they may fall short when it comes to addressing pain and symptoms (person-centered care).
This is where palliative care shines. You can still receive treatment for cancer, and as you do, a palliative care specialist can work with your doctor to reduce the impact that symptoms and side effects have on your day to day life.
The goal of palliative care
The goal of palliative care is to improve quality of life for the patient and their family. This happens using a team approach. Doctors, nurses, specialists, chaplains, caregivers, etc. all form a team which works together to help patients:
- Cure, or halt disease
- Maintain quality of life
- Coordinate care
- Make informed decisions
This can begin at any stage of the illness.
Palliative care can, and should, be provided at any stage of the lung cancer journey. Treating symptoms and side effects is as important as treating the cancer itself. By reporting them as soon as they occur, your doctor can address them early on. You are then more likely to continue to get the care you need throughout the course of your treatment and beyond. The aftermath of treatment must also be considered and treated. This contributes to your overall quality of life.
But, few people understand what a palliative care specialist does…
In a 2011 national survey, the Center to Advance Palliative Care, American Cancer Society, and the American Cancer Society Cancer Action Network found that 70% of consumers weren’t at all knowledgeable about palliative care. Yet, once informed about palliative care and its benefits, 92% of consumers would consider palliative care for their families and believe that patients nationwide should have access to it.
Unfortunately, physicians tend to equate palliative care with hospice and only refer patients to this important service for end-of-life care.
American Society of Clinical Oncology believes cancer patients should have early access to palliative care. They even updated their guidelines in 2017, to reflect this:
“Patients with advanced cancer, whether inpatient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment.”
Doctors should refer patients with advanced cancer to a palliative care specialist for the optimal treatment of issues that arise during the course of treatment. Palliative care relieves pain and symptoms, reduces hospitalizations, ER visits and unnecessary tests, and also increase the length of a patient’s survival. Oncology and palliative care specialists can (and should) collaborate at any stage of the disease to extend survival and contribute to a high quality of life.
Palliative care is not hospice.
Hospice patients are referred based on a prognosis of 6 months or less. Palliative care has nothing to do with your prognosis. It is need-based, based on need and suffering. Talk to your oncologist to increase coordination of care with a palliative care specialist. If your oncologist is resistant to palliative care, talk to a palliative care specialist yourself. They can reach out to your oncologist to explain how palliative can increase the amount of time the patient can continue with treatment. This might just help y9our oncologist improve the level of care for other patients, as well!
Palliative care can be essential beyond treatment for lingering issues such as neuropathy and immunotherapy-related issues.
Another myth about palliative care
Palliative care is covered by insurance, and you can continue curative treatment while receiving these services. There are even home care specialists who deliver palliative care. They are also experts at monitoring and safely dispensing opioids. So if you are dealing with cancer-related pain which requires opioids, you can get more knowledgeable help. Give it a try and see what you think.
Palliative care specialists see the person beyond the patient, beyond the disease.
For more resources on palliative care, check out www.getpalliativecare.org.
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:
I also blog at Heather Erickson Author/Writer/Speaker