When your loved one faces a serious or life-threatening medical condition, it can be confusing and stressful to know how to help as a caregiver. Your loved one’s medical care team may suggest they receive palliative care. What’s palliative care exactly, and how does it involve you? Palliative care provides compassionate medical, spiritual, physiological, and social support for the whole person instead of focusing on a specific medical condition.
Palliative care is often a separate, quality-of-life-focused treatment for those with serious medical conditions, such as cancer, congestive heart failure, kidney failure, stroke, dementia, Alzheimer’s, Parkinson’s, multiple sclerosis, cystic fibrosis, and many other diseases, according to the National Institute on Aging at the National Institutes of Health.
As the word palliative suggests, this treatment reduces the intensity of the medical condition and lessens your loved one’s physical and emotional discomfort. Palliative care works to improve the quality of life of your loved one, with or without curative care occurring simultaneously.
Palliative care focuses on physical symptoms, emotional wellness, spiritual support, caregiver needs, and practical considerations, according to the National Cancer Institute at the National Institutes of Health. You can make arrangements for palliative care as soon as your loved one receives a diagnosis that may warrant it. Palliative care can be provided to people of all ages, and you don’t have to wait for your loved one’s symptoms to progress to a point of crisis to seek palliative care.
Why is palliative care needed? It helps patients manage stress, anxiety, and depression, as well as physical symptoms such as pain, shortness of breath, nausea, immobility, insomnia, and chronic fatigue. Medications, therapies, patient and family education, spiritual guidance, and more can be implemented to decrease the physical and emotional discomfort. It can be heartbreaking to witness your loved one facing medical challenges. Once patients feel more comfortable and functional, caregiver stress levels also tend to drop.
According to the National Institute of Nursing Research at the National Institutes of Health, recent research indicates people who receive palliative care experience less pain and nausea, can breathe easier, feel better emotionally, and can communicate more clearly.
Palliative care reduces high levels of suffering and distress among patients with serious illness, at any stage of the disease. Palliative care can be beneficial to patients who:
When looking into palliative care, it may be important to consider starting the process sooner versus later. Research studies show that starting palliative care early in the course of an illness makes it easier for the patient’s wishes to be followed, reduces stress, boosts confidence in medical decision-making, and supports the emotional and spiritual wellness of patients and their families, according to National Institute of Nursing Research at the National Institutes of Health.
The first step toward accessing palliative care is to talk with your loved one’s primary care doctor or the specialist supervising their treatment. Your medical provider may be able to connect your loved one with a palliative care specialist or a palliative care facility with a skilled team. These professionals and teams usually receive specialized training or have certifications in palliative care.
Palliative care teams typically consist of your loved one’s primary doctor or disease specialist, nurses, and other professionals such as pharmacists, chaplains, social workers, psychologists, physical therapists, art and music therapists, and dietitians.
You can look up palliative care professionals nationwide through the Center to Advance Palliative Care and the National Hospice and Palliative Care Organization. A referral may be required for your loved one to access care through some providers. If this situation occurs, please visit with their medical care team to further coordinate care.
It can be overwhelming and stressful as a caregiver when your loved one faces a serious or life-threatening medical condition. Palliative care specialists understand the unique challenges facing caregivers and provide tailored support to help them cope. This takes many forms, including offering spiritual support through a chaplain or religious leader, addressing the caregiver’s emotional needs, and connecting caregivers with supportive social services and resources.
Caregivers can help their loved ones navigate palliative care by communicating often with the palliative care team, according to the Department of Veterans Affairs. This means you should try to have a basic understanding of your loved one’s medical condition or illness along with understanding your loved one’s life and care goals. Don’t be nervous to speak up — you know your loved one in a capacity that the palliative care team doesn’t.
It can sometimes be easier to envision the benefits of palliative care through a real-world scenario. Imagine your friend, Maggie, telling you she has been diagnosed with Non-Hodgkin’s Lymphoma. You are worried about your friend and her spouse, Miguel, as Maggie immediately begins chemotherapy to treat her cancer.
Following the first chemotherapy session, Maggie faces exhaustion, physical and emotional pain, and nausea. She worries about her future and her spouse. Miguel is understandably overwhelmed with the diagnosis and seeing Maggie struggle with chemotherapy. However, he continues to try to be her rock, despite facing his own emotional turmoil.
Maggie’s oncologist at the hospital connects her with a palliative care specialist on staff. The specialist, Hana, offers Maggie appropriate pain medication and anti-nausea medication to treat her physical symptoms and relieve discomfort.
As a palliative care specialist, Hana knows that the mental, emotional, and spiritual aspects of a person’s life need support, too. She has the hospital’s chaplain provide counsel and pray with Maggie and Miguel for spiritual support.
Figuring out how to pay for medical care can be daunting, so Hana connects Maggie and Miguel to the hospital’s financial counselor for further assistance. The financial counselor works with the couple’s private insurance provider to determine coverage and create payment plan options.
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With the financial aspect handled, Hana then schedules a visit for Maggie and Miguel with the hospital’s social worker. The social worker connects Miguel to a local support group for people whose spouses have cancer. Hana sees that Maggie is also struggling with her mental and emotional health and connects her with a therapist in the area.
These supportive measures help the couple as Maggie continues through her chemotherapy treatments in the coming months. As Maggie continues in her journey, she can also opt to receive palliative care at home or through a senior living community.
While many clinics, hospitals, and medical centers offer palliative care, your loved one can also access palliative care through home health care providers. Often a loved one may feel more comfortable receiving palliative care in the familiar surroundings of their home.
So, what is palliative care at home? A medical professional or palliative care specialist from a home health care provider can offer many different services at home for you and your loved one. These range from providing pain management to helping navigate difficult emotions to offering spiritual guidance. The palliative care specialist may make regular visits to your loved one’s home depending on their medical condition and individual needs. Speak with your loved one’s medical care team to learn if receiving palliative care at home is appropriate for your loved one’s unique medical situation.
As a caregiver, you may feel confident that you can provide a version of palliative care at home on your own. However, palliative care is for the patient and their caregiver. You deserve support during this challenging phase of life. Let the experts help both of you on this journey.
If your loved one lives in a senior living community, speak with the management about the palliative care capabilities in their community. It is common for senior living communities, specifically assisted living and memory care communities, to have palliative care teams on staff or to contract with a palliative care provider. You may also need to coordinate with your loved one’s medical care team to start palliative care in a senior living community.
The on-site palliative care teams or specialists at senior living communities provide similar support to what is provided at home or through a medical center, hospital, or outpatient clinic. The overall philosophy of palliative care remains the same regardless of the location of the patient. Quality of life will always be the main focus for palliative care specialists.
Determining how to pay for palliative care can be essential to receiving the appropriate care for your loved one. You can check with your loved one’s private insurance provider to determine if palliative care may be partially or even fully covered through their policy.
Does Medicare pay for palliative care? There is not a clear-cut answer to this. Medicare covers certain types of palliative care under certain circumstances.
Medicare Part A may provide hospice care, but not necessarily palliative care, according to Medicare. Your loved one has to meet specific requirements to qualify under Part A. Medicare Part B, however, may pay for medical care that specifically addresses symptoms. Generally, Part A works as hospital insurance focused on care, such as hospital care, skilled nursing facilities, and home health care, while Part B works like medical insurance covering doctor services, outpatient care, durable medical equipment, and more. It is best to speak with your loved one’s medical team or a Medicare representative to learn more about possible coverage.
As noted by the Center to Advance Palliative Care, Medicaid may also pay for palliative care in some instances. However, Medicaid varies from state to state on the coverage of palliative care. It is best to contact your loved one’s local Medicaid office for guidance on qualifications and coverage.
Is your loved one a veteran? Eligible veterans may be able to access palliative care through the Department of Veterans Affairs, according tothe Captain James A. Lovell Federal Health Care Center. To learn if your veteran qualifies, contact the VA directly for an accurate determination of benefits based on your veteran’s discharge status and other considerations.
If your loved one does not have access to insurance, Medicare, Medicaid, or VA benefits, please contact their medical team for additional guidance. They may be able to connect you and your loved one with a social worker or financial counselor through their hospital or medical center who can provide further assistance.
Many people mistake palliative care to be the same as comfort care; however, there are some big distinctions between the two. What is comfort care? It often refers to the process of keeping your loved one comfortable through pain medication, emotional support, and other methods to improve their quality of life, according to CaringInfo, a program of the National Hospice and Palliative Care Organization.
While comfort care may be similar to palliative care in its overall purpose, comfort care is reserved for those who are not necessarily seeking to cure their medical condition. Those who elect to utilize comfort care typically seek to lower the amount of medical interventions in their lives. They understand and have accepted that they are approaching the end of life.
Comfort care can be considered a component of hospice care. Hospice care is designed for those in the end stages of terminal illness, while palliative care is for anyone who needs help managing a major health crisis, a serious medication condition, or a terminal illness. Contrary to comfort care, choosing to receive palliative care does not mean that your loved one has chosen to stop treatments to cure or maintain their medical condition.
In the real-life example with Maggie and Miguel, comfort care, as a component of hospice care, plays a role in their lives when Maggie’s cancer becomes terminal. Maggie and Miguel elect to receive hospice and comfort care in their own home instead of continuing treatment for cancer at the hospital. Maggie wishes to spend her remaining time with her beloved dogs and her spouse in the familiar surroundings of their home.
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The hospice nurse, Hank, supports Maggie’s quality of life by addressing her mental and physical needs through comfort care during the end-of-life process. When Maggie wants to speak about preparing for death, Hank answers her questions with honesty, dignity, and respect. When she wants help eating her favorite ice cream or petting her dogs, Hank makes it happen.
As Maggie’s time winds down, Hank assesses her physical and emotional discomfort. He administers morphine, an opioid painkiller, to Maggie to reduce air hunger — the discomfort created by difficulty in breathing — as her body begins to slow. Maggie feels anxiety and experiences nausea, which Hank treats with prescription medications. These comfort care measures improve Maggie’s quality of life even as her condition continues to deteriorate.
As a caregiver, it is important to understand that the need for palliative care does not necessarily indicate that your loved one is near the end of their life.
According to CaringInfo, treatments to maintain or cure your loved one’s illness may continue while your loved one receives palliative care. However, it’s important to know that your loved one’s options remain open.
Even if your loved one seeks palliative care, they may also have the ability to seek comfort care through hospice, depending on their overall medical condition in the future. If you need guidance in finding a home care provider or a senior living community to provide palliative care to your loved one, connect with a Senior Living Advisor at A Place for Mom.
Center to Advance Palliative Care. Get palliative care.
Center to Advance Palliative Care. (2015, August 13). Palliative care is covered under both public and private insurance plans.
Medicare. Hospice care.
National Cancer Institute at National Institutes of Health. (2021, November 1). Palliative care in cancer.
National Hospice and Palliative Care Organization. What is comfort care? CaringInfo.
National Hospice and Palliative Care Organization. What is palliative care? CaringInfo.
National Institute on Aging at National Institutes of Health. (2021, May 14). What are palliative care and hospice care?
National Institute of Nursing Research at the National Institutes of Health. What is palliative care?
U.S. Department of Veterans Affairs.What is palliative care?Veterans Health Library.
U.S. Department of Veterans Affairs and U.S. Department of Defense, Federal Health Care Center. (2018, February, 19). Palliative and hospice care. The Captain James A. Lovell Federal Health Care Center.
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