Your Serious Illness Journey and Palliative Care
A person can be diagnosed with a serious illness such as cancer, heart disease or respiratory disease at any age and any phase of health. Some serious illnesses can be cured or go into remission; other serious illnesses will advance and involve end of life care treatment choices.
Palliative Care: An “added layer of support and care”
Palliative care helps a person manage the pain, symptoms and stress of living with a serious illness. It can be an added layer of support and care to your regular care, starting at first diagnosis and continuing all through your serious illness journey. Here are some commonly asked questions. We’ve summarized the questions below in a one page fact sheet . Click here “What is Palliative Care?
What is Palliative Care?
Palliative care is specialized health care for individuals diagnosed with a serious illness which helps to relieve the pain, symptoms, and stress of living with a serious illness. It’s often described as an “extra layer of support” to improve a person’s quality of life. Palliative care offers medical treatments in addition to your regular care, and can provide emotional and spiritual support for both the individual and their family. It can help make everyday life the best it can be.
Who can ask for Palliative Care?
Any individual diagnosed with a serious illness seeking relief from the symptoms, pain and stress of their illness, or a family member, can ask their doctors and care providers for palliative care. Serious illness can occur at any age, and may include cancer, respiratory diseases, heart disease, Alzheimer’s disease, HIV/AIDS, kidney or liver failure, multiple sclerosis, and more. Palliative care can be effective all through your serious illness journey: while you are receiving curative treatments, managing a serious chronic illness, or living with serious advancing illness and considering end of life care treatment options.
How does Palliative Care work?
Every person diagnosed with a serious illness an experience the pain and symptoms of their disease quite differently. A palliative care clinician or a team of palliative care specialists which may include nurses, social workers, pharmacists, doctors, clergy, work together with the patient’s regular doctors to find the source of the problem. The clinician or team talks with the patient about the best possible treatments options to help relieve or control pain, and to improve symptoms and side effects such as shortness of breath, nausea, loss of appetite, fatigue, trouble sleeping, and to manage stress, anxiety and depression. They review the benefits, risks, trade-offs and likely outcomes of the treatments options, and the patient chooses care that matches his or her goals and priorities. Patients often report that palliative care discussions give them a clearer understanding of their illness and more control of their decision-making. Palliative care typically treats the “whole” person and their family and offers emotional and spiritual support throughout a serious illness.
When can I ask my doctors and care providers for Palliative Care?
Anytime. You or a family member can ask for palliative care when first diagnosed and throughout the phases of a serious illness. For example, the added care and support can help patients undergoing aggressive treatments when working towards a cure or remission of an illness. If serious illness is not or no longer curative, palliative care can be supportive to help control the progression of the illness, to manage symptoms that may change over time, and to improve comfort care and quality of life. The palliative care clinicians/team can help patients and families understand the phases of an illness and look ahead to offer information about possible treatment options and choices.
What benefits can I expect with Palliative Care?
When you are experience serious illness, whether it is curable or a advancing or terminal illness, it can be very helpful to the individual and family to have a extra support and care in living with your illness. The benefits may include relief from symptoms, better understanding your illness, improved communication with your clinicians and planning for future care, emotional support for you, your family and caregivers, decreasing the amount of emergency visits to hospitals, and in some patients, living longer and more comfortably with their illness.
Where can I find Palliative Care and how do I pay for it?
Most adults can receive palliative care where they live or receive care. However, palliative care can vary widely as to which care providers in your community offer it, what services they provide, and how to pay for it. Many insurance plans cover all or part of palliative care. Ask your primary care doctor or clinician for a palliative care referral that aligns with your illness and your care goals.
What’s the difference between Palliative Care and Hospice Care?
Palliative care is for individuals at any age and at any phase of health living with a serious illness. Hospice care is a benefit you receive from Medicare when your doctor determines your life expectancy is 6 months or less. Often people receiving hospice care also receive palliative care services. Palliative care can offer comfort care and improve the quality of everyday life, and for some, increase life expectancy.
How do I know if Palliative Care is right for me?
Talk with your doctors and care providers to learn how an “added layer of services and support” can help you or a loved one relieve the pain, symptoms and stress of living with a serious illness. You can also learn more at the “Get Palliative Care” website. They offer a short quiz to see if palliative care is right for you. Click here to see the quiz.
How To Start A Palliative Care Discussion
Consumers and care providers can start a meaningful discussion using these handy discussion guides below.
“Palliative Care: 5 Things to Talk About With Your Care Providers” Discussion Guide
For Consumers: You or your family members and caregivers can start a discussion with your doctors, nurses or health care providers about palliative care. Here’s a handy discussion guide you can bring to your next care provider visit. The guide is based on a person’s right to have adequate information about your illness and treatment options to make informed choices, to direct your care goals and make a care plan, and ensure your care providers know and honor your values and choices. You can ask one question or a few questions- whatever is right to you. The guide can be used all through your serious illness journey. Click here. “Palliative Care: 5 Things To Talk About With Your Care Providers”
“Palliative Care: 5 Things to Talk About With Your Patients & Clients” Discussion Guide
For Care Providers. Clinicians, nurses, social workers, care managers and other care providers can start a palliative care discussion with their patients and clients. This is the same discussion guide we offer to consumers with the questions mirrored from the care providers perspective. You can ask one question or several to open up a discussion. Offer the guide to you patients and clients to have effective discussions all through an individual’s serious illness journey. Click here “Palliative Care: 5 Things To Talk About With Your Patients & Clients”
New: Palliative Care Fact Sheet and Discussion Guide
You can download a 2 page document that contains both the “What’s Palliative Care?” fact sheet and the “5 Things to Talk About…” discussion guide.