Hospice is Not a Death Sentence: What Happens When Someone Graduates from Hospice?

U.S. Army veteran, Iwao Nagata, was under hospice care for a year. At 94, he couldn’t remember conversations, his legs started getting weak, and he started falling frequently. Things went downhill fast for Iwao. He was frustrated, confused, and wasn’t eating. He became frail, constantly dizzy, couldn’t sit up, and lost his will.

Fit all his life, Iwao used to enjoy diving from the boats he would build himself, ballroom dancing with his wife, and practicing martial arts. Along with his strong body, Iwao always had a sharp mind, according to his daughter, Sheryl. So it was of course concerning for her and anyone who knew him how his condition was worsening so quickly. As his condition continued to decline and he was hospitalized frequently, Sheryl opted for hospice care for her father.

Iwao Thrives Under Hospice Care

To everyone’s surprise, Iwao did remarkably well under hospice care and he grew stronger with each passing month. “You have that stigma, ‘hospice’ that means it will end soon – but I think they made him better,” declared Sheryl.

Now at a veterans home, Iwao enjoys playing bingo and poker. “I stay on the winning side,” he said with a grin. After receiving hospice care, his mind is back, and his arms are strong. “He is scolding us and bossing us around – so now I guess he is ok,” Sheryl laughed.

According to Sheryl, when asked what she would tell people on the fence about hospice care, she is very positive in her response due to her father’s good experience. She shared: “If it’s end of life I would say ‘move as fast as you can because you need to make that decision.’  The decision to take hospice is the best decision you can make because they make you feel – like Japanese the saying ‘kimochi’ – peace of mind – they bring in volunteers and give respite for what you need. They care for the patient really well, but they also care for the caregiver which is sometimes just as important.”

It is nice to hear stories similar to Iwaos. Unfortunately, not everyone has such a positive experience with hospice or when they graduate, as I will explain.

How Can Someone Graduate from Hospice?

To qualify for the Medicare hospice benefit, patients must be certified by their physicians as having a life expectancy of six months or less. Hospice is not typically a place, but rather a type of care that can be delivered at home, in an assisted living community, in a nursing home, or, least likely, in a facility solely dedicated to hospice care. To be recertified after six months, patients in the hospice program must show progressive decline in their condition. When a patient chooses hospice care, Medicare switches into “hospice mode,” which means that Medicare no longer pays for any treatments or procedures which seek to cure; rather, hospice care provide comfort care and palliative care intended to make life as comfortable as possible for the patient, and also for the family and caregivers. Once in the comforting care of the hospice team, it is not uncommon for patients to see improved health conditions.

When a hospice patient’s condition no longer meets Medicare criteria, their hospice must comply with Medicare rules and discharge the patient from hospice care. Medicare, however, does not limit the number of times a patient enters or exits hospice care. Should there be another decline in the future, hospice can return.

So, what happens to someone who graduates from hospice care? When time is limited, perspectives sometime change. For hospice graduates like Iwao, they can enjoy the gift of additional time. For others, there is more to consider, including the path to take upon discharge.

Graduating from Hospice–What to Do Next?

When someone is discharged from hospice care, odds are slim that they’re in good health. This prompts the necessity for a continuum of care that extends beyond hospice.

Approximately 20% of patients who select hospice care are still alive after six months and wind up getting released from hospice care, according to NPR. These are some things to consider for people who graduate from hospice care:

  • Sometimes when patients are discharged from hospice, medical providers leave patients and family members on their own to find alternative care support, resources, and guidance.
  • Leaving the safety net of hospice care can be traumatic for some. Family caregivers often have to fill the gap. Over 53 million family caregivers provide unpaid care each year to their loved ones. In 2017, family caregivers accounted for 470 billion dollars (in hours of care provided).
  • Patients need a backup plan for care that they can rely on if their conditions improve or remain stagnant. Whether hospice agencies can provide that care or not, patients need a plan to continue their care, which they often don’t have.
  • Hospice does a good job of equipping patients and families for the possibility that they may die while in hospice care, but hospice providers can do a much better job of equipping patients and families for the possibility that they may instead be discharged from hospice before death. In the event that a patient’s condition plateaus or improves, they need providers to guide them on their path.
  • More hospice providers need to check in with former patients to make sure they and their caregivers know what comes next and have the resources they need to continue care in the best possible situation for their loved one.

Nursing Home Hospice Care or In-Home Hospice Care?

Most people prefer to age in place and stay at home with in-home services and supports, and most people likewise prefer to have in-home hospice care when the end appears to be near. However, nursing homes are sometimes a better option to consider from the get go for those who need hospice care. Nursing homes are staffed with nurses and doctors 24/7, making them (in some cases) a better choice for a loved one’s long-term care needs and end-of-life needs. Many nursing homes have a contract with one specific hospice provider, so if you have a loved one in a nursing home, you might not have a choice in picking a hospice provider. However, you know that if your loved one in a nursing home, they will never be left without care even if the patient is no longer eligible for hospice care.

Protecting Your Family’s Assets

One major perceived downside of nursing home care is that it is always catastrophically expensive, costing between $12,000-$14,000 a month in the DC Metro area. And this is true, unless you work with an experienced elder law attorney to protect assets and connection with Medicaid and nursing home care. Often, the best time to create your long-term care plan is before you actually need long-term care. If you’re over 65, we recommend that you begin your long-term care planning now.  But even if you are currently receiving long-term care services for yourself or a loved one, it’s still not too late to plan to protect assets and improve dignity and quality of life. Just call us whenever you are ready to make an appointment for an initial consultation:

Fairfax Elder Law Attorney: 703-691-1888
Fredericksburg Elder Law Attorney: 540-479-1435
Rockville Elder Law Attorney: 301-519-8041
DC Elder Law Attorney: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.