No one wants to think about end-of-life care for themselves or a loved one. But when it comes down to it, end-of-life care is another important way of looking after a person’s health both mentally and physically. “It’s about finding the right fit and putting a team in place to help you achieve your goals,” Scott Kaiser, M.D., a family physician and geriatrician at Providence Saint John’s Health Center in Santa Monica, California, tells SELF. Those goals typically include keeping someone with a terminal illness comfortable in their own space or providing a comprehensive care community when at-home support is no longer enough, but with some nuances depending on the specific situation.
Whether you’re considering end-of-life care for yourself or a loved one, you’ll likely come across terms you’re not entirely familiar with, which can be intimidating. Here’s what you need to know about end-of-life care options.
Hospice is meant to provide symptom relief and general health care in situations where a person’s doctor believes they have around six or fewer months to live, according to the National Institute on Aging (NIA). This is why it’s only intended for people with an incurable serious illness, like terminal cancer, who has stopped treatments to cure their disease or slow its progress. However, “you’re not going to get kicked out of hospice if you live longer than [six months],” Jeffrey Landsman, M.D., a primary care physician specializing in geriatric care at Mercy Medical Center, tells SELF.
Hospice can be provided in different settings, like at a person’s home or in a facility like a nursing home, hospital, or hospice center, the NIA says. Either way, it relies on a team of people like nurses, doctors, social workers, spiritual advisors, and trained volunteers to provide medical, emotional, and spiritual support to the patient, the NIA explains. “With hospice, we are all about optimizing a patient’s comfort,” Martha Twaddle, M.D., medical director for Palliative Medicine & Supportive Care at Northwestern Medicine – Lake Forest Hospital, tells SELF.
Members of the hospice team visit regularly to provide care. For instance, a nurse might visit once or twice a week while complemented by a medical aide who comes more often, Dr. Landman says, adding, “They’ll call the doctor if they think a patient needs more medication or an adjustment in medication and will come more frequently if symptoms change.” Even when no one is there physically, someone from the hospice team should be available by phone 24 hours a day and seven days a week to help, the NIA says.
2. Palliative care
Like hospice, palliative care can be provided at home, in a hospital, in an assisted living facility, or in a nursing home, the NIA says. And, also like hospice, it’s aimed at helping people who have serious illnesses, like heart failure, cancer, or Alzheimer’s disease. But unlike hospice, people who opt for palliative care may also receive treatment that tries to cure their illness (or slow its progression) while getting care for their symptoms, the NIA says. It also doesn’t require that a person receives a diagnosis of six or fewer months to live in order to receive care. “Patients in palliative care could live years, not months,” Dr. Twaddle says.
Palliative care depends on a multidisciplinary team that works with the patient, their family, and their other doctors to provide medical, social, emotional, and practical support, the NIA says. This team can include specialized doctors and nurses, social workers, nutritionists, and chaplains. The goal is to deliver comprehensive care that helps to ease a person’s life in a multitude of ways.
A person can start palliative care as soon as they receive a diagnosis of a serious health condition. If they come to a point where their medical team believes medical treatments are no longer working to manage or slow the condition, they can continue palliative care with an emphasis on pain relief or transfer to hospice.
3. Board and care homes
“Many people say they prefer to receive end-of-life care at home, but someone may need to go to a … care facility if their needs have outstripped the ability for their caregiver to care for them at home,” Dr. Twaddle says.
Board and care homes are one option in this type of difficult situation. (They’re sometimes called residential facilities or group homes.) These small, private facilities usually have 20 or fewer residents who receive personal care and meals, along with having staff on hand 24/7 to help with care, the NIA says. However, more intensive care—like nursing and medical attention—is usually provided at off-site establishments.
4. Assisted living facilities
People in assisted living facilities typically have their own apartments or rooms with shared common areas, the NIA says. There, they receive some help with their daily care (meals, medication, housekeeping, etc.) from 24-hour on-site staff, but not as much as they’d usually get in a nursing home, the NIA says. However, there may be a few levels of care offered with people paying more for more intensive support, the NIA says.
5. Nursing homes
Nursing homes focus more on medical care than your typical assisted living facility, but they also provide personal care services like giving residents three meals a day and assisting with daily activities, the NIA says. They may also have rehabilitation services, like physical and speech therapy, and recreational activities, too.
Some people will go to a nursing home as a transition after a hospital stay, but most people live there permanently because they need ongoing care, the NIA says.
6. Continuing care retirement communities
These usually offer different services in one spot, the NIA says. Many have independent housing through homes or apartments, assisted living, and nursing care, all in the same location. Health care and recreational programs are usually provided, too. “People may move around in a continued care retirement community,” Dr. Twaddle says. Meaning, they may start out in an independent home, move to an apartment with assisted living care, and then go into a nursing home equivalent on the same campus.
Whatever you end up choosing for yourself or your loved one, doctors stress that planning ahead whenever possible is key.
For instance, you may apply for hospice even if you’re not sure it’s an option you want to take right now or at all. “Getting a hospice consult earlier rather than later is a good thing,” Dr. Kaiser says. “Then you can have a referral and choose if you want to enroll or not.”
Giving yourself as much time as possible to sort out the logistics is really an act of kindness. There’s a lot to deal with between the emotional load and figuring out things like how you’ll pay for this care, since the details of what Medicare, Medicaid, and private insurance do and don’t cover can vary based on the situation. This will also give you time to find the best care possible for yourself or your loved one rather than going with whatever is available because you’re out of time.
Many people near the end of their life who aren’t in hospice or palliative care end up in the emergency room or hospitalized when their symptoms get worse, and without adequate preparation, that prospect can be incredibly stressful for everyone involved, Dr. Kaiser says. “That’s a real shame,” he says. “Then people aren’t getting the care that they would want.”
If you’re not sure what is best for you or your relative, talk to your primary care physician. They should be able to help answer your questions and steer you toward a choice that’s right for you or your loved one.