Palliative Care: Improving Survivors’ Quality of Life
Currently, 6 in 10 adults in the US have a chronic disease, and 4 in 10 adults have two or more chronic diseases (source 1). While researchers and doctors have long studied treatment options for chronic diseases such as heart disease and cancer, and used these findings to treat chronic diseases successfully, have we forgotten about the person living with the disease? The person deciding on cancer treatment, figuring out finances, and dealing with fear and emotional concerns. That’s why LIVESTRONG is here: to make sure people and families get the person-centered care they need, at the time when the need it the most. For this month’s Survivor Community Update we sat down with Dr. Elizabeth Kvale, Program Leader of Supportive Care and Survivorship at the LIVESTRONG Cancer Institutes, to discuss palliative care and its role in cancer survivorship and person-centered care.
What is Palliative Care?
Dr. Kvale, who started her work in hospice care, and later transitioned her work to palliative care, specifically in the realm of cancer states “the biggest misconception about palliative care is that it is only for people at the end of life.” Palliative and hospice care often are compared. However, the two are not the same. Hospice care is a type of palliative care. Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer (source 2). Dr. Kvale describes palliative medicine as “a discipline in medicine that developed through the need for additional support services for patients and their families to receive better care. It’s about getting the best care possible in the face of illness no matter what the disease state.”
When Dr. Kvale was tasked with building an outpatient clinic at University of Alabama in Birmingham, she states, “Initially we met with stakeholders and asked what their needs were for this outpatient clinic. What we found was the need for supportive care, specifically survivorship and palliative care.” Palliative care is an approach to care that addresses person-centered care, it focuses on the person as whole, not just the disease. The goal is to provide the patient with support that prevents or treats the symptoms and side effects of the disease and its treatment as early as possible. In addition to managing symptoms and side effects, palliative care also addresses the psychosocial symptoms, such as financial and insurance needs or emotional and peer support concerns, and helps patients and families making care decisions (source 1,6).
How is palliative care provided?
Beyond their primary board certification, medical providers specializing in palliative care receive board certification in palliative care through the American Board of Internal Medicine. “All medical providers should have a core palliative care skill set, just like they should have a CPR skill set. The distinction between a medical provider and palliative care specialist comes with the sub-specialty skill set, which comes with advance training in palliative care.” Specialty training allows palliative care specialists to provide holistic care to the person, family, or caregiver that focuses on physical, emotional, social, and/or spiritual issues cancer survivors may face during their cancer journey (source 2).
“One of the standards required for palliative care certification, is an inter-disciplinary team such as a doctor, nurse, social worker, chaplain, psychologist, dietitian, physical therapists, and others to ensure that we are providing the best possible team to support people with a serious illness.” Another way a palliative team can work in conjunction with your oncology care team is to manage your care and provide the best quality of life possible during treatment. Also, a a palliative care specialist can provide caregiver support to facilitate communication among members of the health care team to identify goals of care for the cancer survivor (source 6).
Dr. Kvale says, “My biggest piece of advice is for survivors to engage in their care. Engage with palliative care, social workers, a chaplain, or a musical therapist. Engage with whoever is needed to improve your quality of life during treatment and beyond.”
Survivorship and Palliative Care
When do cancer survivors ask their medical providers about access to palliative care? “For advanced cancer survivors, it is recommended that people have access to palliative care from the point of diagnosis onward.” Dr. Kvale adds, “In terms of life extension and quality life, access to palliative care for advanced cancer patients actually extends life expectancy for cancer survivors, providing a survival advantage on average of 3 months, which is huge for an intervention that doesn’t really have side effects and improves quality of life.” The American Society of Clinical Oncology recommends that all patients with advanced cancer receive palliative care. In fact, studies have shown that by integrating palliative care as a component of a survivor’s cancer care soon after a diagnosis of advanced cancer, it can improve a survivor’s quality of life, mood, and may prolong survival (source 4, 5).
“It’s about getting care sooner rather than later.” Dr. Kvale provides two examples: “For people with an advanced cancer diagnosis palliative care should be started from the point of diagnosis and onward for quality of life benefits. And for those not diagnosed with advanced cancer, at the point when they have symptoms that are difficult to control, or when they are having psychosocial distress and their needs are not being meant.”
Improving Quality of Life for Cancer Survivors
“As cancer survivors transition into living life following cancer diagnosis and treatment, they are faced with the challenge of managing physical and psychosocial symptoms related to their treatment and disease state. The best skills to assist in managing these symptoms are available through inter-disciplinary palliative care teams.” The physical and emotional effects of cancer and its treatment may vary from person to person, and often times are unique to that survivor. Palliative care addresses a broad range of issues, integrating a survivor’s specific needs into their survivorship care plan, and working to assist survivors in successfully transitioning their ongoing care to a primary care provider where appropriate.
Palliative care can be provided at any point along the cancer care continuum, from diagnosis to the end of life. Cancer survivors can receive both palliative care and cancer treatment simultaneously to improve their quality of life. “There is an expert approach to managing the symptoms cancer survivors’ experience. Palliative care is helping cancer survivors better manage and self-manage their physical symptoms and psychosocial distress, define and discover what that new normal is for their survivorship journey, and set goals that enhance their quality of life.” A recent study found that metastatic cancer survivors who received palliative care reported a higher quality of life and lower levels of depression after learning coping strategies from a 24 week palliative care program (source 6).
“Palliative care takes a very proactive stance, it’s about working with each individual person, to help restore their personhood despite what cancer has taken away from them.”
Palliative Care and the Future of Healthcare
One major component of palliative care is talking about your diagnosis, treatment, and needs. While these conversations can be difficult at first, they help your care team understand what you want and expect from your survivorship care plan. This gives you more control over your care and an active role in your survivorship care plan. Dr. Kvale hopes to see this process improve in the future. “Palliative care exists as a field because medicine got really good at treating disease, but we lost track of the person in the middle of all that. Palliative care is that place where we stop and say ‘Is this improving the value of care my patients are receiving, is the cost that they are going to pay as person, both financial and time, worth the benefits.’ It’s about finding the right size healthcare to deliver the highest value of care as possible for people living with a serious illness.”
Palliative Care and the Future of Cancer Care
“We are living in this really exciting era of cancer care. Access to new treatment options are changing the natural history of some diseases states. More and more people are living with cancer for a longer period of time, and there is an opportunity for palliative care to be incorporated into a survivor’s treatment plan to improve their quality of life, so that we are not only getting life extension but really good quality time extension.”
Dr. Kvale offers this advice for any survivor considering palliative care, “It’s about having better days, irrespective of where you are in your cancer journey, if you think palliative care might be for you, it might be worth exploring, do it!”
For more information on palliative care:
Find a Palliative Care Doctor or for more information: GetPalliativeCare.org
National Cancer Institute: Palliative Care in Cancer
Sources:
1. Centers for Disease Control and Prevention, Chronic Diseases in America. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm
2. National Institutes of Health, National Cancer Institute. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet#q6
3. American Academy of Hospice and Palliative Medicine: http://aahpm.org/career/certification
4. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine 2010; 363(8):733–742. [PubMed Abstract]
5. Ferrell BR, Temel JS, Temin S, et al. Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline Update. Journal of Clinical Oncology 2017; 35(1):96–112. [PubMed Abstract]
6. Cancer.net
a. What is Palliative Care: https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/what-palliative-care
b. The Importance of Palliative Care for Patients and Caregivers: News from the 2016 Palliative Care in Oncology Symposium: https://www.cancer.net/blog/2016-09/importance-palliative-care-patients-and-caregivers-news-2016-palliative-care-oncology-symposium
