People with chronic illnesses, including all types of cancer, can benefit from palliative care. Unfortunately, many people don’t use the services for a variety of reasons. One study found that 7 in 10 Americans don’t know what palliative care is, or they confuse it with end-of-life care, which leads them to mistakenly believe they’re ineligible for services. Even healthcare professionals don’t fully understand the many benefits of palliative care for patients, according to the study findings. 

From the community: “I am not terminal and I have a Palliative Care doctor. I get where you folks who think it's only for patients who are dying are coming from... Until it was suggested that I see a Palliative doctor I thought it was only for folks in hospice too. But that's not the case. Many also see patients who have chronic illness... Over the years I saw several pain docs and never really found one that listened and understood what was going on with me. I feel very lucky to have found a Palliative doc to handle my pain care. He really hears what I am saying, understands and works with me to find options that work for me. What it comes down to is what you want the focus of your pain care to be. It's a very personal choice and each clinic and doctor is different. Considering Palliative Care along with Pain Management and Physiatry gives people with chronic pain another option.” – Inspire member 

What is palliative care?

Palliative care is supportive care. Palliative care specialists provide a range of services that support people with chronic or life-threatening illnesses, including kidney cancer. The focus of palliative care is to improve a person’s quality of life by helping to manage disease symptoms and treatment side effects. Palliative care is also called comfort care and symptom management.

Organizations like the American Society of Clinical Oncology (ASCO) and the American Cancer Society (ACS) recommend that people with cancer receive palliative care services at the start of any cancer treatment. Studies show that the early use of palliative care services offers many benefits. The services may:

• help patients and caregivers cope better with the disease

• improve a person’s prognosis, overall survival rates, and quality of life

• reduce emergency room visits and hospitalizations

• lessen the risk of mental health disorders like anxiety or depression 

Who are the members of a palliative care team?

Palliative care specialists complete advanced training or certification in supportive care services. These specialists are members of your care team. They ensure your doctor stays informed about your health status, complications, and needs. 

Members of a palliative care team may include:

• certified palliative care medicine doctors and nurses

• dietitian

• pastor or chaplain

• patient navigator 

• social worker

How does palliative care help people with kidney cancer?

Anyone with a kidney cancer diagnosis can benefit from palliative care, regardless of the cancer stage. You don’t have to have advanced or metastatic kidney cancer to use these services. Still, research indicates that only about 13% of people with advanced kidney cancer receive palliative care services. 

With palliative care, a team of specialists works together to help you manage symptoms — like pain, fatigue, and loss of appetite — brought on by the cancer. This team also helps you cope with side effects of immunotherapy, targeted therapy, and other kidney cancer treatments. Some of these treatments can cause nausea, muscle aches, blood pressure changes, and skin rashes.

Palliative care providers offer a wide range of services, including: 

• physical support

• mental health support

• caregiver support 

• practical support

• spiritual support

Physical support 

Palliative care can be especially helpful if you need dialysis to take over for the kidneys. A dialysis machine filters waste from the blood and returns the clean blood to your body. You may need dialysis if you have surgery to remove a cancerous kidney (nephrectomy), and the remaining kidney doesn’t function as it should. It’s estimated that a third of people living with kidney cancer will develop chronic kidney disease (CKD), a condition that can damage the kidneys to the point that they can no longer effectively filter the blood. 

People with chronic kidney disease (regardless of whether they have kidney cancer) can also benefit from palliative care, especially if they’re on dialysis. In one study, more than half of people on dialysis reported symptoms like chest, bone, or joint pain, shortness of breath, extreme fatigue, itchy skin, extreme fatigue, and insomnia.

Your palliative care specialists will work closely with your doctors, nurses, and pharmacists to minimize problems. This may include helping to guide medication changes that lessen treatment side effects or ease pain.

They can also help with:

• complementary methods to alleviate pain and insomnia, such as guided imagery, acupuncture, mindfulness exercises, and biofeedback 

• kidney-friendly dietary changes 

• lifestyle changes to improve overall health

• massage, physical therapy, and chiropractic services to ease muscle and joint pain

• occupational therapy or assistive devices to make daily tasks easier

From the community: “I recently saw a couple of articles on palliative care and it struck me that it's just the kind of service/care chronic pain patients (or anyone with a chronic illness) needs… This sounds like the ideal treatment for chronic pain: caring for the person as an individual, not just an illness or average, and alleviating their most distressing symptoms, but otherwise letting the body do what it will. It requires the humility to admit we are facing the unknown, or that a cure will not be possible. It’s giving up on fixing the underlying problem and treating only “Quality of Life” issues, which are all that’s left for patients when they cannot be cured…” – Inspire member

Mental health support

Studies show that people who receive palliative care services have lower rates of depression. Your palliative care specialist can connect you and your loved ones (who are also affected by the disease) with mental health resources like psychiatrists, therapists, and support groups. 

Caregiver support

A palliative care expert can educate your loved ones about the disease and what they can expect as the illness progresses. They can also help your loved ones understand your wishes about medical interventions and end-of-life care. In addition, these specialists offer services that ensure your caregivers’ health and emotional needs don’t get overlooked.  

Practical support

Cancer treatments, as well as the loss of work during illness, can financially strain families. Your palliative care specialist can help you navigate insurance and billing issues, as well as employment concerns. They can also guide your family through the process of setting up a living will, healthcare power of attorney, and other advanced directives. 

Spiritual support

A chaplain who’s a member of your palliative care team may meet with your family, or a palliative care specialist may work with a religious advisor of your choosing. A spiritual advisor can help your family more openly discuss beliefs and values, helping achieve a sense of peace with a diagnosis or prognosis.

What’s the difference between palliative care and hospice? 

As noted, palliative care is supportive care available to anyone with a chronic illness. This includes illnesses like diabetes, heart failure, and Alzheimer’s disease — not just cancer or terminal illnesses. You can start receiving palliative care services immediately after a diagnosis. 

In comparison, hospice care is end-of-life care. It has a similar goal to palliative care: easing symptoms and improving quality of life. However, hospice care typically starts when a physician says a person has less than six months to live. Hospice care providers step in during the last stages of an illness when a person is no longer receiving treatments to cure or stop the disease. 

From the community: “It is important to recognize that chronic illness is exactly that, not likely to go away, and needs to be managed effectively. It takes courage to admit this is teh new normal in our lives, but it is freeing to do so. We can move on to more effective management instead of waiting for things to return to normal, which in most cases will not happen.” – Inspire member

Sources

• What is palliative care? American Cancer Society. May 2019.

• Moss AH. Chapter 19: Palliative care in patients with kidney disease and cancer. American Society of Nephrology. 2016.

• Kidney cancer. National Kidney Foundation.

• Primeau ASB. Low, but increasing use of palliative care seen in RCC. Cancer Therapy Adviser. Nov. 6, 2020.

• Palliative care in cancer. National Cancer Institute. October 2021.

• Parikh RB, et al. Early specialty palliative care — Translating data in oncology into practice. New England Journal of Medicine. December 2013.

• Rowland K, et al. Palliative care: Earlier is better. The Journal of Family Practice. December 2010.

Disclaimer

Member comments are lightly edited for length and to remove identifying information but are otherwise reproduced as they appear in the community as part of public posts.

This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.