Hospice care doesn’t have to be a last-resort decision.
When it comes to hospice care, many of us may think of it as a service reserved for the final days of a person’s life. But while it is true that hospice can be immensely helpful during the waning hours of a person’s life, what we often fail to realize is that patients and their families tend to get much more out of the experience when they spend weeks or months in hospice.
“There’s a lot of misunderstanding that people think that hospice is just for a few days and that when you are going on to hospice, that means that you should be in the active dying process, which is not accurate at all,” explains Tara Liberman, DO, a geriatric medicine, hospice, and palliative medicine specialist with Northwell Health. “A lot of people don’t realize that hospice is a six-month benefit, and can be extended if the patient’s prognosis continues to decline.”
Hospice is a type of medical care that’s available to people with a life-limiting diagnosis of six months or less, and is covered by Medicare Part A. Patients who receive hospice care may have any number of health diagnoses, including metastatic cancer, heart failure, chronic obstructive pulmonary disease (COPD), dementia, and many other conditions.
The focus of hospice care is a patient’s physical, emotional, and spiritual comfort for the remainder of their days. A team of hospice providers comes to the person’s home to offer services that help to improve their quality of life.
“Social work. Nursing. Home attendants. Chaplaincy. Medical equipment. Medicine,” Liberman says. “This support allows people to be able to be comfortable in their home and avoid things that they may not want, like going to an emergency room or doing tests and procedures that may not be of benefit to them, [which] cause them more suffering.”
Hospice also supports a patient’s loved ones, which helps to ease the burden on family caregivers. Relatives may receive advice regarding day-to-day medical care, and they may benefit from counseling, spiritual guidance, respite care, and bereavement services.
“Counseling during the care, I think, is very helpful for patients’ loved ones, to be able to have access to someone to talk about what they’re experiencing,” Liberman says. “They have access to a chaplain themselves if they want to talk about spiritual care. They have access to the nurse who will have direct contact with the physician.”
Why some people don’t call hospice right away
Many people are unfamiliar with hospice care and don’t think to sign up until a doctor mentions it. Unfortunately, some doctors don’t recommend it to patients early on.
“A lot of providers haven’t been educated or trained on what the benefit is, so they tend to refer late and often in crisis mode, which is not ideal,” Liberman says.
Still, some families who have been told about hospice may delay getting care for their loved one because the topic may feel taboo to them.
“There’s a lot of cultural reasons for why people don’t want to talk about hospice or death in general,” Liberman says. “Some people think that if they talk about it with a loved one, they will die quicker. And also, some cultures just don’t have that conversation.”
Why it’s beneficial to enter hospice early
When patients enter hospice early, they and their families may take advantage of the offered services for weeks or months, instead of a handful of days.
In hospice, providers can visit the patient’s home. Medication and durable medical equipment are delivered, eliminating trips to the pharmacy, and help is never more than a phone call away.
“Do they need a hospital bed, a wheelchair, or a walker? That will be provided and brought to them,” Liberman says. “They will have the ability to call someone 24 hours a day for any needs, and there’s an actual person that will pick up the phone and understand the case who may even be able to send somebody out in the middle of the night to help try to support whatever symptom may be occurring.”
Often, the combination of comfort care, therapy, and spiritual guidance helps patients feel more at ease, and relatives often notice a positive change.
“They see their loved one become more peaceful,” Liberman says. “It’s a relief, as a family member.”
Overwhelmingly, families that have a lengthier hospice experience are happy with the service.
“Your health care benefit is providing you something that you are entitled to, and you should be able to use it for the most amount of time—why would you settle for just a few days?” Liberman says. “I’m sad to say that I can count so many times when someone said to me, ‘I wish I had known about this sooner.’”