My sister is not Death's Grim Reaper

She's a hospice nurse. When I tell people her occupation, I typically receive a response like this: "She must be a very special person. I could never work in a place where people go to die." Hospice is a "place," and equating hospice to death, are just two of the misperceptions that hospice care providers and proponents are constantly working to dispel. Providing correct information that hospice is a philosophy of care (not a place) takes on special importance in November because it is National Hospice and Palliative Care month.

Data from 2010 indicates that more than 68% of hospice patients reside (and eventually die) in the place they call home. This includes 40% of patients living in private residences, 9% in assisted-living facilities and 19% in long-term nursing homes. These figures are consistent with hospice's delivery of care model that aims to create an environment for an end-of-life experience that is most natural and comfortable for patients and their families. A hospital's linoleum floors, fluorescent lights, intercom noise and equipment alarms are anything but natural or comforting. It makes sense that most people who are approaching the end of their lives would like to be in their own bed or recliner chair. (I feel that way when I just have a head cold or influenza.) In fact, some studies suggest that more than 80% of Americans want to pass away peacefully at home.

In the hospice model of care, the patient needs a primary caregiver who is willing to oversee the patient's needs. Over time, the caregiver's responsibilities may increase as the patient becomes less able to care for herself/himself. The primary caregiver is typically a spouse, child, sibling or close friend, but she or he could also be someone paid by the patient or family to serve that role. Because hospice's healthcare providers do not provide round-the-clock in-home care, the primary caregiver plays an essential role in hospice care.

The hospice model of care places the patient and primary caregiver in the center ---at the core of the care team--- as they are the key decision-makers. This makes hospice's model of care quite different from traditional medical care. An interdisciplinary team including the nurse, social worker, hospice aide, spiritual care practitioners, a physician or nurse practitioner and volunteers provide special services and guidance to the patient and primary caregiver. In essence, they surround the patient and caregiver with support and expertise. They make scheduled in-home visits to provide symptom management, personal hygiene services, and counseling, but are also on-call 24 hours per day to provide guidance and support. I can actually imagine some patients and caregivers feeling a bit overwhelmed by the degree of in-home contact they can receive from hospice care providers.

At its best, hospice is a holistic model of care. A case manager---typically a registered nurse----will usually visit the patient at least weekly to discuss symptoms, medications, and nutrition, as well as special equipment needs like a mechanical bed. A hospice aide will visit to assist with bathing; a social worker will visit to discuss issues of family dynamics, finances, respite care for the primary caregiver, and feelings of loss; a volunteer coordinator will offer visits by others, such as spiritual care volunteer, a musician, a beautician, a chess player. You get the picture. Importantly, the patient and caregiver are encouraged to make decisions about whether they want these services; to think about how a particular service might enhance their comfort, make them smile and feel hope, help them find inner strength, or ease burdens on their mind, body and spirit.

At my request, my sister thought about and asked her hospice colleagues about other misperceptions about hospice care. A few key themes emerged. First, that hospice care accelerates a person's death. Some people erroneously believe that once an individual signs onto hospice, the care they receive is designed to assist in hastening death and the patient will succumb to their illness sooner than if they were receiving standard care. The evidence shows the opposite.

One study published in 2007, for example, compared survival time for hospice and non-hospice patients with congestive heart failure or one of five cancer diagnoses. Of the representative sample of Medicare beneficiaries with these six ailments, the hospice patients lived an average of 29 days longer than the patients who had not entered hospice.

A second related theme heard by these hospice professionals involves perceptions that patients are forced to give up all their medications. As my hospice-nurse sister explained, the patient decides which medications to take or forego. This is consistent with the principles of patients' rights and autonomy, such as those adopted by the Patient Self-Determination Act of 1999. This includes a patient's right to accept or refuse any medical treatment. Similarly, if a hospice patient changes her mind and wants to resume curative therapies, she can leave hospice care at any time.

The notion that hospice "takes away" a patient's medications may emerge out of discussions hospice staff have with patients, especially new patients, about all their current treatments and medication. It's not unusual today for individuals, especially the elderly, to be taking daily a dozen different types of medications. Some pills may be prescribed by their cardiologist, some tablets from a neurologist, more pills from their orthopedist, and others from a general practitioner. On admission, the hospice staff and patient discuss and evaluate the pros and cons of continuing to take those medications. Ultimately, the patient has the final say.

The hospice staff may recognize, for example, that a patient in transition (i.e., physical symptoms suggesting he only has a few weeks to live) is having trouble swallowing. The nurse may recommend that he continue taking medications that help him in the short-run (e.g., Lopressor for high blood pressure) but consider stopping his daily dose of cholesterol-lowering pills and baby aspirin. A few less tablets to swallow in the morning could be the difference between a good or bad day, but that choice is left to the patient.

A third major misconception described by my sister is that hospice means the patient has given up hope. She explained, however, that hospice providers recognize hope is not limited to a cure or a miracle. Patients who have a life-limiting illness may find hope in other accomplishments----big and small---like seeing an old friend another time, attending a wedding, finishing an art project, catching a glimpse of the first cardinal in springtime, or an opportunity to settle an old grievance with a loved one. Defining hope is extremely personal and depends on where one is on life's journey. Hospice care helps patients and families maintain and embrace hope, however they define it. The founder of the modern hospice movement Dame Cicely Saunders (1918-2005) used to say "we'll do all we can to help you not only die peacefully, but also to live until you die."

Probably one of the biggest misunderstandings about hospice care is that the medications used for symptom management, such as morphine, will shorten a person's life. Nothing is further from the truth. Morphine is an extremely effective pain reliever. Healthcare providers who specialize in hospice and palliative care consider it the "gold standard" for pain relief. (Not all people at end-of-life experience pain.) My sister and her colleagues' experience tells them that when morphine is administered properly, it can help patients with pain live each day to the fullest. A hospice nurse will offer the individual a low dose of morphine initially and as the patient begins to tolerate that amount----and the temporary side effects like lethargy subside--- the patient's dose can be increased if needed.

Hospice patients, their caregivers and nurses use the phrase "start low and go slow." It refers to both the dose of morphine and how it may be increased over days, weeks and months. Like any medication, morphine must be prescribed and taken as directed. If a patient takes or a caregiver administers an overdose of morphine, the patient can be harmed or even die. That's no different than other pharmaceuticals.

Unlike morphine, other pain medications have a "ceiling" above which higher doses can't be prescribed. Pain relievers such as those containing acetaminophen (e.g., Tylenol #3 or Vicodin), are toxic to the liver, and just a couple too many pills in a single day can have a deadly consequence. A patient taking acetaminophen for pain is limited to eight 500 mg tablets per day, an amount often inadequate to control their intense symptoms. Without opiode-based pain medications, the patient may not get adequate pain relief and will suffer.

In the six years that my sister has worked with hospice patients, I've heard her frustration with just one part of her job. It's this: many patients are referred to hospice care too late in the dying process for them to reap its benefits. (In Michigan where she works, the most common length of stay is only 3-7 days.) This same sentiment was expressed poignantly by the anonymous practitioner writing on Hospice Physician's Blog:

"Here I sit at the end of hospice interdisciplinary team (IDT) meeting with a sense of sadness. ...We have just reviewed and had a quiet moment for all the patients that have died in the last week. The list is long as usual but what saddens me the most is there are names on this list that I've never heard before. To be the Medical Director of a hospice and to not recognize a name is a tragedy. If this only happened once in a while it wouldn't be so sad but it happens every week without fail. Why does this happen?

It happens because so many patients and families don't know about the benefits of hospice care. They don't realize that hospice is about LIVING not dying. It's about living the rest of your life on your terms, living your life with as much quality as possible, it's about allowing your family to participate in a part of your life that will unfold no matter what we do.

If you couple the above, with physicians avoiding conversations related to end-of-life care, you get patients referred to hospice in the last hours and days of their life.
I look at these names and feel regret for the patients and families as I think how much help our hospice team could have been physically, spiritually, psychologically and socially if we'd been involved during the last six months of their life. Next week I'll have to start my apologies all over again to a list of names I've never seen before. 'Sorry, I don't recognize your name' I'll be muttering under my breath as I go down the list and read the names one by one."

Ultimately, personal physicians are responsible for having conversations with patients about end-of-life care. We know, however, that current medical practice and physician training emphasizes treatment and cure. Most physicians don't receive training in end-of-life care, and many probably want to avoid the subject of death because it may make them feel like a failure. Although many of us in the U.S. have not learned how to talk about death; death is part of life's journey. I welcome the day when all of us, including healthcare providers see the value of discussing end-of-life care, and understand the consequences of failing to do so. The national average length of stay for those in hospice care is only 26 days. We have a lot of work to do to educate the public about the physical, emotional, and social benefits of end-of-life care for patients and their families.

Some medical schools recognize that physicians-in-training need hands-on experience with end-of-life care. Wayne State University (WSU) School of Medicine in Detroit, Michigan, for example, typically has four medical students per month teamed up with a nurse from Livonia, Michigan-based Angela Hospice. The students may accompany an admission nurse as she evaluates patients who have been referred by their physicians for a hospice evaluation, and will observe and participate in typical days of a nurse case manager on visits with her patients. My sister is one of the Angela Hospice nurses who welcome the chance to show the medical students a patient-centered model of care. The students don't use the terms "depressing" or "morbid" to describe the experience; most frequently, they say it was "awesome" and "great." I'm confident they tell their fellow students and professors the following: "hospice is not a place," and hospice workers consider it a blessing, not a burden, to be part of patients' final journeys.

Physicians who are uncomfortable speaking to patients about end-of-life care should take a few minutes during National Hospice and Palliative Care month, to read "How do I talk to my patients about hospice?" and "Why are early referrals important?"

A dear friend used to remind me "don't be sad for me, we're all terminal." It's up to us to decide how we will spend the time we have, whether years, months or a few days.

Celeste Monforton, DrPH, MPH is grateful to her sister Denise Grabowski, RN of Northville, Michigan and her colleagues at Angela Hospice for sharing their insight about hospice care.

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Excellent post! The last comment is so true, but of course our society wants to deny it.
And to think the right demagoged the concept of a discussion on end of life issues.

What a wonderful and true article about hospice care. My husband is now on hospice care and has been for two months. With hospice we are able to manage his illness at home. It is our plan that he will die at home, surrounded by people who love him. It would be impossible without hospice care. We have the advantage of trained medical professionals available night or day, and access to the medicines he needs to keep him comfortable. Hospice is a great comfort to the caregivers, like me. I cannot say enough good things about hospice care. Thank you for the excellent article.

Celeste, great post. I hope everyone has a chance to read this. Thank you for including me in this very passionate, thorough and informative post. I especially love the quote from Dame Cicely Saunders (1918-2005); "we'll do all we can to help you not only die peacefully, but also to live until you die." I think that is the key essence of hospice care. I want to help people LIVE until they die. I will send out a tweet with your post. Thank you again.

-Hospice Physician

Hospice Physician,
I came across your blog when I was researching for my post and read through many of your entries. I sensed your disappointment in knowing that end-of-life care expertise is available yet so few people take advantage of it. That's exactly what I've heard from my sister. I know she feels frustrated when she admits a new patient who is in severe pain, the hospice team kicks into action with their expertise to begin relieving that pain, but the patient succumbs to their illness in just a few days and before the patient has a chance to feel at peace. The hospice team knows they could of done so much more for the patient but they didn't have a chance to do so. I know one of the real challenges is knowing if the time is right to sign onto hospice. We need to break the stigma that hospice is about dying.

By Celeste Monforton (not verified) on 15 Nov 2011 #permalink

Thank you for this wonderful post.

Both my mother and my husband opted for hospice when their conditions became terminal and insofar as such things can be 'good', it was wonderful - they were able to stay at home, with family and remain (relatively) comfortable during their final days.

It amazes me to hear that some folks believe hospice shortens life or reduces quality of life - my own experience says otherwise.

Wonderful post, Celeste - and many thanks to your sister and the other hospice providers who do such important work!

I love this two-minute video featuring hospice patient Doris Jones from Sutter Health in California - it really captures that hospice is about living the rest of your life the way you want to.

Thanks for this post. My mother was in hospice shortly after her congestive heart failure was diagnosed. She was actually in hospice for quite a long time, over a year. Hospice was so beneficial to her that she actually stabilized and improved, and had to be discharged from hospice. Several years later she's still here. In my mother's case, I believe hospice is actually responsible for helping extend her life.

By Anonymous (not verified) on 15 Nov 2011 #permalink

Our 87-year old dad is also a "graduate" of hospice care. He signed onto hospice this summer but with the patient-centered care he received at home from the hospice team, he gained weight and his symptoms improved. At his 90 day evaluation he no longer met the criteria for hospice (as defined by Medicare) and "graduated" from their care.

By Celeste Monforton (not verified) on 16 Nov 2011 #permalink