When Is the Right Time for Hospice Care?

“Queenie Hennessy – ‘I am here to die.’

Sister Mary Inconnue – ‘Pardon me but you are here to live until you die. There is a significant difference.”’
― Rachel Joyce, The Love Song of Miss Queenie Hennessy

In an ideal world, every person who lives with a serious illness would have the ongoing support of a palliative care team. As I’ve mentioned in previous columns, palliative care offers patients and families who are living with a life-limiting illness the kind of ongoing support that has been shown to improve outcomes in numerous ways. Not only do patients suffer less and enjoy their lives more, they often live longer when they receive timely and appropriate palliative care.

But we don’t live in an ideal world. In fact, here in the United States, we live with a health care system that is so horribly broken that it fails to deliver quality care a good deal of the time. And palliative care is no exception. Medscape reports that as of 2015, palliative care services were available in 75 percent of the nation’s hospitals with over 50 beds, and 90 percent of hospitals with over 300 beds. But the availability of these services varies greatly depending on where the person lives. Patients fortunate enough to reside in the West, Midwest or Northeast have a good chance of accessing some level of palliative care services while they are hospitalized with a serious illness. But that’s not true for people living in Alaska, Wyoming, or many parts of the South.

Further, and, in my mind more importantly, in most cases, access to palliative care ends when the patient is discharged from the hospital, even though that’s when the hard work of living with a life-limiting illness begins. There may be some level of follow-up in the form of a visiting nurse, home health aide, or social service provider, but that’s hardly guaranteed. In fact, in far too many cases, the patient and their family are left to deal with the challenges of day-to-day living with little or no formal support. And as the person’s illness progresses, they are likely to get little guidance in making the important decision about when to involve hospice in the person’s care.

Hospice: Underutilized and Poorly Understood

There is little doubt among health care providers that hospice is underutilized and poorly understood. Despite the fact that the Medicare hospice benefit is available to almost everyone during the last 6 months of life, most patients who enter hospice do so within two weeks of their deaths. Further, and more alarmingly, many of these patients suffer physically and emotionally for weeks or even months before hospice becomes involved.

Why are patients and their families so reluctant to involve hospice? Much of the blame falls on health care providers, who fail to offer hospice earlier in the course of a patient’s illness or even discuss with the family what hospice care involves. Many patients who leave the hospital under the care of a palliative care team qualify for hospice at the time of discharge, yet few (other than those who are actively dying) move on to hospice immediately. Instead, they are sent home to a sort of limbo in which the specter of death hovers silently — the proverbial “elephant in the room” — until the patient’s symptoms become so unmanageable that someone in the family decides to ask for more help. At that point, much of the benefit of hospice has often been lost.

And, of course, patients and caregivers often fail to access hospice due to its indelible — and frightening — connection to death. Choosing hospice is an acknowledgment that the illness has run its natural course and that “cure” is no longer a possibility. Even when curative treatments are causing enormous suffering, that can be an extremely difficult truth to face.  

But what if hospice could somehow be framed in a new way — not as a specter to be feared but as a wonderful benefit — a gift to people who are approaching the end of their lives? What if we could turn the too-long-held paradigm of “hospice means the end” to “hospice means you’re going to get the help you need to make the last months of your life the best they can be?” What if we could convince ourselves and our loved ones that the end of our lives can be full and meaningful, and that hospice can help make that happen for us?

Because the truth is that is exactly what hospice can do. But we have to be open to it — not just as individuals but as a society. We need to work harder to remove the stigma and help people who are approaching the end of their lives realize that hospice caregivers can do much more than just control symptoms: They can facilitate conversations, help loved ones say goodbye, ease the physical and emotional burden of family caregivers, and so much more. And the earlier they are involved, the more benefit they can provide. 

When Is the Right Time?

But how do you know when it’s the right time to call?

First, remember that, in most cases, the patient must be prepared to give up curative treatments if they want to qualify for Medicare-funded hospice care. Keep in mind, however, that this policy is evolving. Medicare is piloting a program in which certain patients who are still pursuing aggressive treatment of their underlying disease will be allowed to take advantage of hospice at the same time. The pilot is not yet complete and involves only 140 hospice providers across the United States. But once the results are in, it’s quite possible this policy will change. 

Also, keep in mind that foregoing curative treatment does not mean foregoing treatment of any kind. A person who chooses hospice will still receive all of the medicines and treatments that help control the symptoms of their disease, such as breathing treatments for COPD or low-dose chemotherapy to manage cancer pain. Hospice does not mean stopping care, it simply means changing the goals of care.

So, when might you or your loved one think about seeking hospice care? Everyone’s situation is different. But as a rule, when a person who is living with a serious illness begins to have any of these issues, it may be time to get hospice involved.

• More frequent emergency room visits of admissions to the hospital
• Frequent infections
• Falling, or falling more often
• Declining ability to take care of their daily needs, such as getting dressed, walking, transferring to a wheelchair, or using the bathroom.
• Change in eating or drinking patterns or significant weight loss
• Skin issues, such as skin tears or sores
  
• Changes in sleep patterns, such as excessive sleepiness, nightmares or insomnia
• Mental changes, such as irritability, depression, anxiety or agitation

In fact, any significant change in a seriously ill person’s physical, emotional or cognitive health may be a sign that hospice care may be of benefit. So, even if you’re not sure, make the call. If it’s not the right time, a hospice coordinator can help you figure out what to look for so you will know when that time comes.

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.