I get this question a lot: “How long can a dying loved one be in hospice care?” Unfortunately, I don’t get this question early enough in the life-care planning process from many Patient Advocacy clients. (Although, in my experience, I always try to find a way to bring it up tactfully as a necessary discussion.)
Without guidance, many families don’t know their options for a loved one’s end-of-life care. As a result, hospice agencies are often called in too late. Comfort care – the entire premise of hospice – can be delivered much sooner in so many cases. Even in good health, death can be a painful process.
(Related reading: Is There a Difference Between Hospice & Palliative Care?)
So why delay relief? The answer is often that families aren’t prepared to accept the inevitable. “She’ll pull out of this,” family members often say. Which might be true, but at what cost to comfort and quality of life? Death is often a difficult discussion for the individual themselves and loved ones on the care-partner team.
This blog discusses eligibility for hospice care, how long individuals may remain on it, and why it’s such a valuable resource to dying individuals and care-partner teams.
Hospice Care: Shattering Misconceptions
Let’s begin by addressing some common misconceptions. A prevalent myth is that hospice is solely reserved for the final days of life. In reality, hospice can offer comfort care and support for months. According to the National Hospice and Palliative Care Organization (NHPCO), around 30 percent of Medicare beneficiaries receive hospice care for seven days or less. But experts conclude hospice is ideally suited for more extended periods — months rather than days.
It’s the merciful thing to do.
Hospice care also is not a hastener of the inevitable. It’s a dedicated effort to enhance the quality of life for however long that may be. If conditions improve, patients can opt out of hospice care and, if necessary, return to it later. This flexibility is comforting for families.
The Six-Month Rule
To answer your question directly, the maximum length of eligibility for hospice care is six months. That is to say, two independent doctors must come to the same conclusion that the individual has six months or less to live. At that point, if eligible, the individual and their care-partner team may mobilize hospice resources.
It’s worth noting, the exact duration of hospice care may vary based on individual diagnoses. This time frame is not a strict rule, but rather a guideline to ensure that individuals receive the care they need during this critical phase of their life’s journey.
Qualifying for Hospice Care
To receive hospice care, a patient must meet eligibility requirements established by the U.S. Centers for Medicare & Medicaid Services. As I said above, an individual is eligible for hospice care if two physicians deem it unlikely that the individual will live longer than six months. This coverage extends beyond actual services to include pre-election evaluation and counseling services.
Understanding the Final Weeks & Days
Let’s hope you’ve had the tough talks and decided to involve a hospice agency early in the dying process. It may seem long and drawn out, but comfort care is important even when your loved one isn’t actively dying.
With six months left, they may be awake, mobile, coherent and eating a fair amount. But that doesn’t mean they’re completely comfortable. They may benefit from hospice’s ability to provide more powerful medications to address pain or spiritual counseling to prepare for “the other side.” (Attending loved ones may benefit from grief counseling and spiritual support, as well.)
As we approach the final weeks and days of life, it’s essential to recognize that changes go beyond the physical. Emotional and spiritual shifts become equally significant. Physical indicators like cool-and-clammy skin, confusion and hallucination, excessive sleeping, incontinence, and difficulty breathing typically suggest death is close.
Discharge from Hospice: A Surprising Reality
Contrary to popular belief, patients are often discharged from hospice. In fact, one in five hospice patients are discharged while still alive due to their condition improving, opting out or other personal factors. Most often, doctors agree on their improvement and that the person’s life expectancy now extends beyond six months.
Patients can appeal a hospice discharge if they believe services are ended prematurely. Planning ahead for health services and logistical considerations upon discharge is crucial. A discharged patient may return to a nursing home, long-term care facility or home.
If their condition deteriorates once more, readmission to hospice is possible. However, it’s important to know that opting out of hospice care automatically revokes financial assistance received from the Medicare hospice benefit.
Hospice Care: Making the Most of Time Left
In essence, hospice care is about making the most of the time left. From increased comfort therapies to unique services like caregiver respite, hospice improves your loved one’s life when they’re facing a terminal illness or otherwise likely have six months or less to live. Death is rarely a comfortable process. There’s no reason to delay starting the journey toward a more comfortable and dignified exit.
Hospice is here to support, comfort and empower both the patient and their families. And that’s what I’m here to do as a Board-certified Patient Advocate in Clearwater, FL. I’m here to help; not to control the process, but to guide and protect your autonomy over important end-of-life decisions.
Feel free to reach out with any questions. Your journey deserves compassionate understanding and unwavering support.