After a cancer diagnosis, the palliative care team can be instrumental in helping patients make wise decisions and live as fully as possible. Unfortunately, myth and misinformation lead some patients to push back at the recommendation to consult palliative care. Here's a handout designed to save you time by emphasizing how palliative care fosters hope and helps patients maintain as much control as possible. Feel free to edit it or use as is.
How Consulting With Palliative Care Helps
Dear Patient,
While taking care of your cancer, we also want to decrease your stress and enable you to live as fully as possible. Sometimes we ask the palliative care team to help us achieve those goals. This handout summarizes facts we need you to know about palliative care.
What is palliative care?
Palliative (pronounced 'pal-lee-uh-tiv') care is a specialty focused on helping you live your best possible life by ...
* Optimizing your comfort
* Strengthening your resilience and coping skills
* Providing support for you and your family
* Helping you make the best decisions for you, especially about treatment
Who does palliative care?
Palliative care is delivered by one or more members of a team of health care professionals. Different hospitals and clinics have different palliative care services. Some have just a few professionals; others have a large team that may include...
* Physicians (including palliative care specialists) and nurses
* Social workers
* Counselors and psychologists
* Pastoral care workers
* Pharmacists and dieticians
* Therapists (such as physical therapists; music therapists; occupational therapists; orthotists and prosthetists; physiotherapists; podiatrists)
Whatever the challenges, big or small, palliative care helps you make life the best it can be by addressing discomforts (such as pain, shortness of breath, and anxiety); decreasing stress; improving sleep; maintaining independence; managing bills; dealing with questions of "Why?"; and helping you talk with family members who have different opinions about your care. Palliative care also helps you by helping your family cope with the changes and challenges.
Is palliative care the same as hospice?
No. This is a common source of confusion. Palliative care is an all-inclusive term for care devoted to improving comfort. Palliative care is for people of any age with any medical condition, including patients we expect to cure.
In contrast, hospice is a specialized type of palliative care for people whose life expectancy is 6 months (or less), whether due to chronic disease, sudden illness or injury, or normal aging.
Do palliative care specialists encourage patients to give up hope?
No, they do the opposite. They ask what you are hoping for. They help you determine which hopes can help you live your best life under the circumstances. They also teach you ways to increase your hopefulness-and find hope if you're feeling hopeless.
Involving the palliative care team gives you more reasons to have hope, too. Studies show that patients who received palliative care report 1) better symptom control and quality of life, 2) less major depression, and 3) more satisfaction with their care. A small study of one type of advanced lung cancer showed that patients who enrolled early in palliative care lived longer. Further studies are under way to confirm and explain that finding.
Do palliative care specialists push your oncologists to stop cancer treatment?
No. They push for a treatment plan that respects your hopes and values. To that end, they help you talk about your desires with your family and physicians, and they help you figure out the best treatment path for you. In some cases, optimizing your comfort may help improve your condition enough to keep some treatment options open. (For more, see our handout, Decision Making and Palliative Care)
Will the palliative care specialist force you to talk about end-of-life plans?
No. We respect your right to control 1) how much you know about your prognosis and 2) whether you discuss what you want done if you ever get too sick to tell us.
We only ask you to keep in mind that people sometimes get very sick without warning. During a crisis, it's much more difficult to talk about treatment decisions. Having these discussions means you don't risk getting very sick before telling us what you want...and end up having things done that you don't want done. Once we've talked, you can forget about the what-ifs and focus on today, confident you've done all you can to maintain as much control as possible, whatever happens... and knowing we will work hard to honor your wishes.
How does palliative care help family members?
No matter how brave and tough you are, your illness impacts your family and caregivers. Palliative care offers services to help them deal with their own needs and hopes in ways that help them and don't harm you. Educational materials, counseling, and support can make a world of difference, whether by helping with meals, transportation, respite care, or troubling thoughts and feelings that are common, normal, and burdensome. Regarding your treatment path, palliative care specialists advocate for you by guiding your loved ones to understand and support your decisions.
What if you're not sick enough to get palliative care involved?
We don't want to leave any stone unturned in optimizing your quality of life while treating your cancer. Palliative care can help us avoid preventable problems and address all treatable sources of distress, even small problems and mild discomforts you can handle in the short run. The better you feel, physically and emotionally, the better you can handle treatments and enjoy life between office visits. Bottom line: It's never too early to ask the palliative care team to assess if they might be able to help improve your quality of life and/or talk about difficult topics.
Where do you receive palliative care?
Depending on your condition and specific needs, you may receive palliative care in an outpatient clinic, in-hospital room, extended-care facility, nursing home, or your private home. Some palliative care services use phone calls and/or telemedicine (computer video calls).
What now?
Let's talk about asking palliative care to help you live your best life today, tomorrow, and every day.