Frequently Asked Questions
What is palliative care?
Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.
- Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support.
- Palliative care is based on the needs of the patient, not on the patient’s prognosis.
- This care is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment. Center to Advance Palliative Care (CAPC, 2019)
What is serious illness?
Serious illness is a health condition that carries a high risk of mortality and either negatively impacts a person’s daily functioning or quality of life or excessively strains his or her caregivers. (source: capc.org/blog)
What is high-quality palliative care?
High-quality palliative care has these core elements, which every patient receives:
1. Comprehensive Assessment including:
- Development of individualized care plan
- Identification of physical, emotional, psychosocial, spiritual, functional & caregiver needs
2. Care Coordination & Communication:
- Collaboration, education, understanding what matters most to each patient and family
- Advance care planning
3. Clinical Services:
- Interdisciplinary Team – specialty training & certification
- 24/7 availability to patients and families
What is the gold standard resource on quality palliative care?
High quality palliative care is consistent with National Consensus Panel Guidelines [pdf]
FAQ for Patients and Families
Why is my doctor or nurse recommending that we add palliative care?
Palliative care is an extra layer of support to help you maintain quality of life, navigate the healthcare system, and explore treatment options. Palliative care increases patients’ comfort by addressing their physical, social, emotional, and spiritual needs.
Once I start on palliative care, will I be able to continue seeing my other doctors?
Yes. The palliative care team works with your other health care providers to help manage your symptoms and enhance your quality of life. They do not replace your other providers. The palliative care team will collaborate with your primary-care team or specialists to develop and if needed, adjust your personalized treatment plan.
Who is helped by palliative care?
Palliative care is appropriate for any age and at any stage of a serious illness; a person does not have to be at the end of life.
When is ideal to start palliative care?
Patients can receive palliative care at any stage of a serious illness. Ideally, palliative care starts early in the course of serious illness – to reduce symptoms and suffering from the beginning, and thereby enable the best possible quality of life for the longest amount of time.
How is palliative care different from usual care?
Palliative care is provided by a team of professionals, who spend a lot of time listening to patients and families so they have a good understanding of what is important to the person needing care and what kind of care that person wants. The care team is available 24 hours a day, 7 days a week either in person or by phone so help is always available.
What are the main advantages of palliative care?
Palliative care supports patients to keep living, for as long and as well as possible. Palliative care provides the best possible quality of life throughout the course of illness. Patients and families have 24/7 access to their care team to address issues and avoid unnecessary or unwanted emergency room visits.
Patients, their families and loved ones, and the healthcare providers who treat them all benefit from palliative care. This is because so much attention is paid to understanding what matters most to the patient and their families. Palliative care is tailored to the individual. This leads to fewer medical crises, better outcomes and a smoother medical journey.
Palliative care helps to manage many symptoms in addition to pain. Pain from serious illness is a common reason to seek palliative care. And palliative care also treats many other symptoms and challenges caused by advanced illness. These can include nausea, vomiting, shortness of breath, anxiety, depression, restlessness, spiritual distress, constipation, diarrhea, loss of appetite, swelling, itching, insomnia, and other issues that may affect the patient’s and family’s quality of life.
How is palliative care different from hospice care?
Palliative care can be given to patients who still have many years to live, including those who may recover from their illness. Hospice care is a type of palliative care that’s given near the end of life, when the patient is expected to have six months or less to live.
Who usually provides home-based palliative care in Hawaiʻi?
Many palliative care teams come from hospice agencies or are affiliated with hospices, but the care they provide is palliative care, not hospice care.
How can I get palliative care?
You can request that your primary care doctor or your specialist contact the palliative care team near you. You can call your health insurance member benefits department to see if palliative care is covered by your plan. Or, If you have a caseworker or public health nurse, ask them to help. You can call any of the hospices in Hawaiʻi to see if you qualify for palliative care. Visit the Community-Based Palliative Care Programs in Hawaii – Kōkua Mau for more information.
What is a “high quality” palliative care program?
High quality palliative care programs have the following basic elements:
- Palliative care is provided by a specially trained team of doctors, nurses, social workers, and chaplains who work to identify and address the patient’s and family’s needs (physical, emotional, psychosocial, spiritual, functional). The team ideally includes a member who is certified as a palliative medicine specialist.
- The palliative care team stays in close touch with the patient and with all other treating providers, so everyone is up to date on the patient’s condition and needs.
- The team works to understand, “what is most important?” to the patient and their loved ones. The team helps the patient understand their condition and their options for treatment. The team helps the patient maintain the best health and sense of well-being possible for as long as possible.
- The team is available by phone or if needed in person for problem solving 24 hours a day, 7 days a week to address issues needing immediate help or advice.
Is palliative care covered by my insurance?
Palliative care visits are covered by some Medicare, some Medicaid plans, and some commercial insurers. There may sometimes be copayments and deductibles. Check with your health insurance provider. Also check, “Who provides supportive care?” Find Community-Based Palliative Care Programs in Hawaii via the Kōkua Mau website.
If the patient needs additional day and/or night personal in-home care how do we get that?
The palliative care team can help you understand your options for additional care.
Where can I find out more about getting palliative care?
- Talk to your doctor
- Check the hospital directory
- Check https://kokuamau.org/palliative-care/
- Check out GetPalliativeCare.org for more information
*Sources: CAPC.org and Palliative Care Myths & Misconceptions: Samaritan Healthcare