You can imagine the scene. A patient lying in a bed, surrounded by softly beeping machines, the disconcerting sight of them connected to seemingly endless tubes and wires. There is a heaviness in the room, an awareness of death that we, busy with our normal lives, find so unfamiliar. We cannot help but wonder, as we visit with that loved one, how many weeks, days, or hours we have left. And often, in the background of this scene, is a hospice caregiver.

So many of us have had personal experiences with hospice, whether it was hospice care for a parent, grandparent, or friend. And so many of us have had positive experiences that have honored the life of a dying loved one. However, sadly, many others have experienced the opposite and seen things in the hospice care system that concern or alarm them. These differing opinions tend to be strong, as they are connected to the loss of a friend or loved one. The purpose of this article is not to unfairly vilify or glorify hospice care; it’s to discuss the realities of hospice and how we as friends and loved ones can and should help patients receiving hospice care.

The main goal of hospice care is to make terminally ill patients, usually with a life expectancy of six months or less, emotionally and physically comfortable. It should focus on enhancing the quality of remaining life, while also providing support for patients’ families. The care is palliative as opposed to curative and includes services such as nursing care, hospice aid services, drug administration, and physician services. Hospice care also varies depending on location and can include routine home care, continuous home care, general inpatient care, and inpatient respite care. Additionally, more people are using hospice care than ever before, and we’re spending more money on it. In 2006, Medicare spent $9.2 billion for hospice care for less than 1 million beneficiaries. The cost was up to $17.8 billion for nearly 1.5 million beneficiaries by 2017.

So, hospice care is an increasingly common type of care that covers many types of services in a variety of different locations. But how do people with loved ones receiving hospice care understand it? In our February 2019 edition of Carpe Diem, we published an op-ed piece sharing the negative experiences of one of our Life Leaders, Elizabeth Callahan, who felt that her close friends receiving hospice care were overmedicated. She believes that the hospice caregivers didn’t value the remaining days of her friends’ waning lives but rather, out of a misguided desire to give them “dignity”, unduly hastened their deaths.

We received a response from the Rt. Rev. William C. Wantland, former bishop of the Episcopal Diocese of Eau de Claire, who wanted to share his own positive experience:

I have just read the anti-hospice article by Elizabeth Callahan in the [February] issue of Carpe Diem. I am truly sorry she had the experience she wrote about, but I fear her experience is not at all reflective of most hospice programs.

When my late wife Jan and I retired to Oklahoma 20 years ago, we were able to look after my mother, who had just suffered a stroke, and was in a nursing home for five years. Toward the end of her life, her condition had deteriorated to the point that her doctor recommended hospice to help with her care. During that whole time, hospice administered no medication whatsoever. All medication was what was ordered by her doctor and was administered under the direct supervision of the head nurse at the home. Hospice provided chaplain service and visitations to my mother. When she slipped into a coma just hours after our last visit with her, hospice immediately notified us, and we were able to bring the whole family together to be with my mother until she died.

Years later, Jan was diagnosed with pulmonary fibrosis and given two to five years to live. As the disease progressed, and Jan became more limited in what she could do, she requested hospice care from our doctor. He arranged hospice care right away.

Jan was able to remain at home until she died. Again, hospice administered no medication whatsoever. The only medications Jan received were what her doctors had prescribed, and I administered them under supervision.

Again, hospice provided chaplains who came every week and also provided with assistance in caring for Jan at home. It would have been almost impossible to keep Jan at home and care for her without hospice. When Jan died, they were there immediately, helped with the funeral home, and even attended the funeral in Seminole.

Chaplains kept in touch with me and, a year after Jan’s death, there was a memorial service for all the hospice patients who had died within that year.

I have to add that before my retirement I also had dealings with hospice in Wisconsin, as they ministered to both clergy and lay leadership in the Diocese of Eau Claire, and my experience then was much the same as my experience in Oklahoma.

Again, I am sorry for Elizabeth’s experience, but it simply does not jibe with my own experience with a number of hospice providers. Hospice, for me, has been a real blessing.

Two very strong opinions about something that obviously deeply impacted both of them. How should we reconcile these vastly differing experiences?

Before answering that question, there is something else we need to consider. In July 2019, the Office of Inspector General released a report investigating the deficiencies in hospice care that posed a risk to patients. The results were alarming. 95% of all hospices in the United States that provided care to Medicare beneficiaries were surveyed between 2012 through 2016. Eighty-seven percent of these hospices had a standard level deficiency during this five-year period, meaning that they failed to meet at least one requirement for participating in the Medicare program, and 69% to 76% of hospices had at least one deficiency each year.] This doesn’t sound very serious, but consider that the most common deficiencies involved poor care planning (such as not providing nurse visits for weeks, despite the patient’s plan ordering more frequent visits), mismanagement of aid services (such as not properly training aides in toileting or transfer techniques), and inadequate patient assessment (such as not reviewing patients’ drug profiles to determine possible side effects).

Additionally, 20% of hospices surveyed had at least one serious (condition-level) deficiency, which means that more than one standard-level condition was not met and that the hospice’s ability to provide adequate care was limited, possibly to the point where the health or safety of patients were at risk. The number of these deficiencies jumped from 74 to 292 from 2012 to 2015.

Finally, the same report notes that 1/3 of all hospices surveyed had complaints filed against them, and many of them were severe, including patients not receiving proper treatment to control pain or manage symptoms or patients not receiving a notice of patients’ rights in a language they could understand. Thirty-two percent of these complaints were substantiated.

In light of this, the Office of Inspector General recommended the Centers for Medicare and Medicaid Services strengthen its oversight of the hospice program to better protect patients and provide necessary information to patients and caregivers, to help them make knowledgeable decisions about their care.

And I think this recommendation may help us navigate the often opinion-fraught waters of hospice care. As the study has shown, there are clearly documented problems found in hospices in the United States, serious ones that impact patient care. Hospice care, like anything else in this fallen world, is flawed, however well-intended. What I hope we can agree on, no matter what our own personal experiences, is that patients should be protected and given adequate care. And we can only ensure that by being observant. If you are a caregiver or have a loved one in hospice care, ask questions. Learn what care is being administered and if it meets with not only the necessary quality of care but the desires and goals of the patient.] If you see something that is wrong or deficient, report it. Research hospice agencies before loved ones need to use their services and learn what their values are. To learn more about hospice care, we recommend you check out AFL’s end of life curriculum Embrace the Journey. The curriculum covers the subject at length and discusses how to choose the right hospice and to protect loved ones who are receiving care.

For those of you who have had good hospice experiences, we are glad that your loved ones felt honored and valued in their final days. For those of you who have had negative experiences, we grieve with you. But no matter one’s experience, it is clear that loved ones and friends have a responsibility to speak up for patients who aren’t able to do so themselves.

Written by AFL Administrator Robin Ferguson. This article was originally featured in the September 2019 Carpe Diem newsletter.