When is it time for hospice?
They’re the five words you may never want to utter: “Is it time for hospice?” After all, hospice care — a type of medical care that focuses on managing symptoms and pain rather than curative treatment — seems to signal that the end of life is near. But there are advantages to asking this question sooner rather than later.
Many terminally ill patients wait far too long before making this decision. “Most people think hospice is only for the last few weeks of life, when in reality they or their loved one could benefit from beginning it months earlier,” says Katie Ortlip, LCSW, a social worker for Asante Hospice in Grants Pass, Oregon and co-author of Living With Dying: A Complete Guide for Caregivers.
"Hospice services can make more of a difference to patient comfort and quality of life when the hospice is given more time to care for the patient and family," according to the American Hospice Foundation website. "Many people whose family members got hospice care only for a few days before they died say later that they wished they had started earlier."
Here are five factors to consider to help determine if you, or someone close to you, is ready.
1. You have less than six months to live
In order to qualify for hospice care through Medicare, Medicaid, or private insurance, a physician must certify that you have a terminal condition such as Alzheimer’s disease or cancer with an expected prognosis of no more than six months. This is the most straightforward requirement for hospice. But predicting how long someone has to live is far from an exact science. You and your doctor might consider some of the other factors below to help make the decision.
2. You no longer wish to undergo curative treatment
Perhaps you’ve gone through all the possible therapies, and none of them have worked for you. Or maybe you are simply not willing to undergo the pain and side effects of aggressive treatments that may extend your life only a few more months. “There comes a point in time when people just want to focus on comfort, rather than fighting the disease,” says Ortlip.
3. You’ve spent more time in the hospital than out
If you have frequently been in and out of the ER over the last several months without significant improvement in your symptoms, you may want to consider focusing on making the remaining weeks or months less painful and more peaceful.
4. Your numbers are off
If you have an incurable disease like advanced stage heart failure, red flags such as a weight loss of more than 10 percent of overall body weight over a six-month period or a blood albumin level (a type of liver functioning test) under 2.5 may signal to your doctor that your body is no longer absorbing nutrition well. Everyone's situation is different, so always consult your doctor first.
5. You’re failing checklists
Sometimes it’s hard for medical experts to gauge how long someone has left to live, especially if they’re suffering from a condition such as dementia. In these cases, a doctor may rely on the Palliative Performance Scale, which evaluates how mobile a person is (i.e., are they able to move around or mostly bed bound), how much assistance they need with self-care, how much they’re able to eat, and their consciousness level. People with scores of less than 50 percent often die within six months. Other screenings include the Functional Assessment Scale (FAST) to help evaluate dementia and the Edmonton Symptom Assessment Scale (ESAS) to measure symptoms such as pain, fatigue, nausea, shortness of breath, depression, and anxiety.
Talking to your doctor about hospice care
Since the decision for hospice is a joint one made by both the doctor and the patient, either can bring it up. But research suggests many doctors bring it up later than necessary. When physicians were asked when they would discuss hospice care for a patient with terminal cancer who had less than six months to live, only 27 percent of them said they’d broach the topic now, with almost half waiting until they’d exhausted all therapeutic options, according to a 2014 Harvard study published in JAMA Internal Medicine.
If your disease is not responding to treatment and you’re having increasing difficulty performing daily tasks as well as worsening symptoms, it’s worth initiating a conversation with your physician about end-of-life care. And don’t worry about squeezing it into an already packed doctor’s visit: As of January 1, 2016, Medicare, as well as some private insurance companies, now reimburse doctors and other health care providers for 30-minute face-to-face appointments with patients, family members, and/or surrogates to discuss end-of-life care and help create advance care directives.
Written by Hallie Levine, reviewed by Keith Lagnese, MD
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