If you or a loved one are facing a terminal diagnosis — like cancer or organ failure — you may be wondering if hospice would be a good choice. Here are ten things you might not know about hospice that can help you better understand how it works — and whether it’s right for you or your loved one.
You can receive hospice services at a variety of locations. Hospice care can happen at a dedicated hospice care facility, an assisted living or skilled nursing facility, or even at home. You can also receive hospice services at the hospital if you end up hospitalized, but it’s not typically where you will receive ongoing services. Sometimes, hospice patients are admitted to the hospital if their pain or breathing is impaired to a point where inpatient care is temporarily necessary.
You may be able to keep your own primary care doctor. Hospice typically has a doctor on staff that they’ll assign to oversee your case. However, it’s often possible for you to continue to use your primary care doctor. If this is important to you, ask the hospice agency before you sign up. This can be especially helpful if you have a complex medical history or have been using the same doctor for a long time to manage a chronic condition, like diabetes. The hospice doctor typically retains the right to overrule your own doctor. If you ask about keeping your own doctor, listen to how the agency responds. One that gives you pushback or overemphasizes the overruling ability may not be the best fit.
You may not be able to continue treatment for unrelated conditions. Hospice services may not allow continued treatment for unrelated conditions. For example, you may need to stop physical therapy for arthritis or may not be able to receive treatment for a broken bone if you fall. If you’re receiving treatment for an unrelated condition, before you enroll, ask the agency whether ongoing treatment will be possible once you’re on hospice.
You can revoke hospice services at any time. If you’re unhappy with the hospice agency you’ve signed up with — or if your loved one needs care (like for a broken bone) that’s not covered — you may want to revoke services. And it is your right to revoke at any time.
You may be able to get certain durable goods and medical supplies at no cost. If you need medical equipment — like a wheelchair, walker, or transfer chair for a tub — hospice will typically provide them to you at no cost. The same is true for medical supplies, like catheter bags and adult diapers. Just be aware that higher-ticket items (like a wheelchair) will be on loan only. You will need to relinquish them if you revoke hospice.
Hospice agencies are affiliated with specific hospitals. There may be different hospice agencies that serve your area. Each hospice agency has a relationship with certain hospitals. If you ever need inpatient hospice care, you’ll need to go to one of the hospitals affiliated with the hospice agency you’re enrolled with. All things being equal, you may want to choose an agency that can send patients to the hospital of your choice. But since hospice patients can often get the care they need without ever entering a hospital, consider whether you could live with going to a different hospital in a pinch. This can help broaden your choices of hospice agencies.
You have the right to request a different nurse. Much of your inpatient care will be delivered by a nurse assigned to you by the hospice agency. It’s essential that this nurse is a good fit for the patient and their family. If they are not, most agencies should give you the right to request a different nurse.
You may want to get an assessment but not enroll immediately. Many families who’ve had loved ones on hospice often remark that they wish they’d started hospice earlier. Part of the reason for this is that it can often take 24 to 48 hours (if not longer) to get a hospice evaluation — and subsequent approval to start. But if, for any reason, it doesn’t feel right to start hospice just yet, ask the agencies you’re considering how much time you have from the time of approval to the time you must enroll. Some will require you to make a fast decision (like within one business day). Others will let you pick a date in the future — say, a few weeks or more in advance — and then let you move the date up to an earlier time if your condition changes.
You may be able enroll a loved one in hospice. If your loved one is no longer capable of making their own decisions and you have a health care proxy, you have the right to sign them up for hospice if you decide it’s the right thing to do.
You don’t need to be on hospice to receive treatment for pain. Maybe you don’t want to go on hospice because you still want to pursue treatment for your qualifying condition. Or maybe you don’t want to give up treatment for an unrelated condition (like physical therapy for arthritis or back pain). Palliative care, which provides care for comfort and pain relief, may be an option. Some palliative care services may provide care to someone who is homebound (or living at an assisted living or skilled nursing facility), while others may offer it only on an outpatient basis. Palliative care is also typically available for hospital patients, though you may need to proactively advocate for it.