Facts about Hospice Care Everyone Should Know

Hospice isn’t a place. It’s a type of care that focuses on living…living as fully as possible, up until the end of life. Hospice brings comfort, love, and respect to the patients and families they care for.

Considered to be the model for high-quality, compassionate care at the end of life, hospice care involves a team-oriented approach to care that includes expert medical care, pain-and-symptom management, and emotional and spiritual support. All care is expressly tailored to the patient’s needs and wishes.

Hospice offers the services and support that Americans want when coping with a serious or life-limiting illness.

The goal of this type of care is to treat the person instead of the disease, and focus on the family caregivers, not just the individual.  The quality of life is emphasized, not its duration.

Just the Facts: National Hospice and Palliative Care Organization reports:

Hospice usage in the U.S. is growing. Every year, more than 1.65 million Americans with life-limiting illness are cared for by the nation’s 5,100 hospice providers.

  • The median length of service for hospice patients is 19.1 days (half of patients receive care for more days, half of patients receive care for fewer days).   Yet, more than 35 percent of patients die or are discharged in seven days or less – too short a time to benefit from the full ranges of services a hospice can offer.
  •  Cancer accounts for less than 38 percent of hospice patients – which surprises many people who mistakenly think hospice only serves cancer patients. The five other leading diagnoses are: heart disease, debility, dementia (this includes Alzheimer’s disease), lung disease, and stroke.
  • Hospice is covered under Medicare, Medicaid, most private insurance plans, HMOs and other managed care organizations.
  • An estimated 450,000 trained volunteers contribute more than 21 million hours of service every year.
  • Research shows that 8 out of 10 Americans would want to stay in their homes surrounded by family and loved ones if they were faced with a life-limiting illness. Hospice makes this happen.

For more information, please contact Emanuel Hospice at 616.719.0919, or email us at info@emmanuelhospice.org.  You can also call the NHPCO HelpLine at 800-658-8898, or visit www.caringinfo.org.

Strength and Growth of the Bereaved Caregiver

I know an elderly gentleman. He is 85 years old. He is a physician, and he is my friend. One day, he joked about his mother. She died 60 years ago. He said with a slightly wry smile, “I think I’m over it!” He isn’t. He knows it. I know it. And he knows that I know. He likes that. It is our special secret.

Mark is also one of my friends. He was 20 when his grandfather died. The two were very close. Mark wrote a letter of thanks and sorrow to Grandpa. He folded it into the box with the ashes. That letter was buried with the ashes. Then we hugged each other and he cried. Of course we know Grandpa didn’t read the letter…unless he did. I know Mark still hurts. He knows I know. It is something we share. It is good. Mark will not “get over it.” He will grow with it. He will grow into it.

Every loss changes us. We incorporate the experience. It revises our concept of who we are. Self-concept. Self-identity. Every loss is finally a growth experience. In that sense, every loss also makes us more fully alive and unique. That deserves recognition.

Too often, we think of strength as a stoic disregard for feelings. It is the no-tears approach. “Move on,” we say. “Get over it.” Not so fast! That attitude makes it nearly impossible for the bereaved caregiver to feel accepted – accepted by himself and by others. It is an unrealistic expectation. Grief is for keeps, not for weeks. And that’s OK. It needs respect. It is normal. Even in the best circumstances – the well-planned “good death” – the caregiver is left to cope with a weight of conflicting emotions. Each of us has our own time line for grieving. That time line needs permission and appreciation, both from the grieving person himself and from those who surround him. If given a chance, then, emotional strength will show up. Strength comes from working with those feelings in an atmosphere of dignity and compassion.

What is strength? How does it show? In broad practical terms, it looks like this:

1. Having strong feelings that are not necessarily pleasant;
2. Having the courage to become aware of those emotions and look at them squarely;
3. Not being afraid to express them openly – belief in self-resilience.

These are almost inseparable qualities.

The “good stuff” is easy to take and to express. It is the happier feelings. The “good stuff” is the sense of having done it “right,” of having conducted the passage to a “good death.” Pride of accomplishment feels fine. All the details of dying receive attention: advance directives, place of dying, pain control, gentle care, promises made and kept, forgiveness requested and received and offered, permission to die granted, goodbyes said, important people present, after-death care given as expected. More. All of that is a distinct source of self-congratulation, self-esteem, and growth for the bereaved caregiver. It is an achievement. It feels grand and extraordinary. It feels just. It feels moral!

Dealing with the “bad stuff” is not as easy. What’s the bad stuff? At least some or all these:

Guilt (for any suffering that might have been prevented – the what-if’s; survivor guilt);

Anger (at the loved one, because he left);

Sadness (of course);

Fear of abandonment (by the whole human world);

Fear of losing one’s mind (becoming insane; uncontrollable repetitive thoughts);

Fear of inability to recover successfully from the loss (sense of enduring emptiness);

Preoccupation with health (exaggerated concerns about physical illness and dying);

Flashbacks, nightmares, and restless nights…

At first, it is hard for the bereaved caregiver to differentiate these feelings. They are overwhelming. They are usually irrational. They are always excruciating. They are also natural.

Even under the best circumstances, recovery for the caregiver is tough. The “bad stuff” needs attention and expression. The feelings are mixed up, and they are powerful. They feel more than a little crazy. The caregiver needs to be able to face these feelings. Strength is not stoic silence. It is not the buck-up stiff-upper-lip way. It is not denial of pain. And it is not “forgetting” about death and dying.

Strength is having the energy to reach out, to show pain, to ask for a sympathetic ear or two or three. It is unashamed tears. It is the guts to talk about the unspeakable and to know, at the same time, that those words and that talk are survivable. It is the belief in the adaptability of the self. It is the maturity of insight. It is trust in intuition. It is confidence that life will return to some sort of balance, an equilibrium. It will be a new and different balance but a balance nonetheless. It is knowing that the relationship to the loved one endures, but in a different form. Strength is the caregiver’s ability to gradually rearrange the relationship in his mind, internally. It is knowing and accepting that he will never exactly “get over it.” The process takes patience and perseverance. All of this is strength. All of it contributes to recovery – to a brand new and higher level of being well. It is a level that has included healthy grieving. Inner resources have been enriched. Life will feel OK again, and renewed. Refreshed. Death shows us how.

Yes, it’s OK to die. And yes, it’s OK and clearly wonderful to live on.

Dying is a pre-existing condition: we all do it someday. A fundamental fact of life is that it ends (to paraphrase Dr. Murphy). Dying is not a mental disorder, although it is an unprecedented event in the life of every human being. Grief is not major depression. This is so obvious that it hardly deserves a footnote. Grief is a normal occurrence in our lives. By definition, it hurts. It has no automatic timetable for ending. This essay is not an effort to address or rewrite any part of the controversial Diagnostic and Statistical Manual of Mental Disorders (DSM), nor does it reflect on the International Classification of Diseases (ICD). Rather, it is an attempt to broadly view the sense of grief as it is perceived by the close caregiver(s) after the death of a loved one. In addition, it is intended to help the bereaved caregiver to cope with, and understand, various intense emotions – some of which reoccur every year, on or near the anniversary date of the death.

Here is a Dr. Murphy “mantra” from her excellent book, It’s OK to Die. Read it and then reread. Memorize. It will make mourning easier to bear.

Life is fleeting and fragile. Live and love as though every day is your last, or your mother’s last, or your child’s last. Leave no words unsaid, leave no plans unmade. (pp. 19 & 21)

Rea L. Ginsberg is a retired Director of Social Work Services and a Hospice Coordinator http://www.linkedin.com/pub/rea-l-ginsberg/59/34b/

New Research Validates That Hospice Saves Medicare Dollars

Research out of Mt. Sinai shows hospice patients have lower Medicare costs, reduced use of hospital services, and that hospice can improve care quality.

(Alexandria, Va) – New research published in the March issue of Health Affairs found that hospice enrollment saves money for Medicare and improves care quality for Medicare beneficiaries with a number of different lengths of services.

The National Hospice and Palliative Care Organization applauds this study that adds to a growing body of research demonstrating the value of hospice care both in terms of high quality and cost savings.

Led by Amy S. Kelley, MD, MSHS, from the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mt. Sinai, researchers looked at the most common hospice enrollment periods: 1 to 7 days, 8 to 14 days, 15 to 30 days, and 53 to 105 days. Within all enrollment periods studied, hospice patients had significantly lower rates of hospital and intensive care use, hospital readmissions, and in-hospital death when compared to the matched non-hospice patients.

The study reveals that savings to Medicare are present for both cancer patients and non-cancer patients. Moreover, these savings appear to grow as the period of hospice enrollment lengthens with the observed study period of one to 105 days.

Study authors suggest that investment in the Medicare Hospice Benefit translates into savings overall for the Medicare system. “If 1,000 additional beneficiaries enrolled in hospice 15 to 30 days prior to death, Medicare could save more than $6.4 million,” they note.

Furthermore, the authors write, “In addition, reductions in the use of hospital services at the end of life both contribute to these savings and potentially improve quality of care and patients’ quality of life.”

“We know that hospice care addresses so many critical issues involving quality of care at the end of life and that hospice brings dignity and compassion when they are needed most. This new study reaffirms other reasons why hospice is the best solution for caring for the dying in a way that provides patient-centered care and is cost effective for the Medicare system,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

This study builds on the valuable work of the 2007 Duke University study by providing further proof that hospice care saves the federal Medicare system money.

Added Schumacher, “For many years, hospice professionals have known through firsthand experience, that the interdisciplinary care they provide to patients and family caregivers coping with life-limiting illness significantly improves quality of life and allows people to focus on living as fully as possible even as life draws to a close. Now the broader healthcare community, regulators and legislators understand more fully the many benefits of hospice care.”

NHPCO reports that more than 44 percent of dying Americans were cared for by hospice in 2011. Among these patients, 84 percent of hospice care was paid for through the Medicare hospice benefit.
“We have an example of a care delivery model that not only scores high in patient and family satisfaction, reduces hospital services, and promotes the dignity of every person cared for but also can be cost effective with regards to federal spending,” Schumacher noted.

Based on the study’s findings, the researchers questioned recent aggressive efforts, including the Office of the Inspector General’s investigation of hospices that enroll patients with late-stage diseases but unpredictable prognoses.

“Our finding suggest these efforts maybe misguided,” write the researchers. “Rather than working to reduce Medicare hospice expenditures and creating a regulatory environment that discourages continued growth in hospice enrollment, CMS should focus on ensuring that patient’s preferences are elicited earlier in the course of their disease and those who want hospice care receive timely referral.”

NHPCO has consistently supported earlier discussions of care options once a person receives a diagnosis of a serious illness.

More information about hospice and advance care planning is available from NHPCO’s Caring Connections at CaringInfo.org.

When knowing changes everything, the value of a map (Part 2)

Many of you felt so strongly about the on-going need to underscore ways to help people identify end-of- life maps that I have decided to create a mini blog series devoted to this topic. You already know the power of end-of-life maps, so I will skip the pontificating and just tell you this true story:

An elderly male, Mr Holmes, came to one of my beds in the ER from EMS. He had been having “trouble breathing for a few weeks but it suddenly became worse over the weekend” according to the paramedic.

When I walked into his room and heard the loud noisy breathing coming from this man, I was a bit shocked and thought “trouble breathing” was an understatement. Mr Holmes sounded like he was breathing through a bent straw or something even smaller. His wife had ridden in with the ambulance and since Mr Holmes could only shake his head “yes” or “no” to my questions, I quickly sat his wife down to figure out what was going on.

When asking her questions, I attempted to appear calmer and more patient than I felt. My instinct was to just skip the questioning, excuse her from the room, and stick a breathing tube in him one way or another; but, that’s not the right way to handle these situations. So, I remained calm and got the information I needed to make my next move, or not. These were the key answers I got from Mrs Holmes:

“He has just been diagnosed with cancer, and we know that it’s spread.”

“He didn’t want any chemotherapy. He told them that 88 year old men don’t need that kind of medicine.”

“We don’t want any life support stuff and no surgeries. We have talked about this.”

“Whew.” When my nurses and I heard this, we breathed a sigh of relief. My respiratory therapist, who had given Mr Holmes a special breathing treatment, took my cue to “stand down” and return the artificial respirator that she had already positioned outside the room.

After turning off this “intubate him by any means” switch, we were then able to return our attention to the “big picture.”

It seemed to me that he had developed a rather rapid and progressive airway obstruction likely due to some tumor wreaking havoc in his neck. But his wife had already made it clear that they did not want any aggressive interventions. So, I ordered some labs and imaging studies to see “where we were on the map” a bit more clearly (although his breathing alone suggested that we were imminently close to the end of his road.)

Family members gathered at his bedside as labs and data trickled in. I shuffled the test results in my hands and prepared to go in to greet this now rather large group of relatives.

I walked in slightly nervously and introduced myself. Immediately, I launched into my best “end-of-life map” soliloquy that I could muster at that moment—“this is the big picture,” “these are the supporting data results,” “I think what this means is…”

The family listened patiently to me and finally, the eldest son interrupted me, “Doctor, are you trying to tell us that Daddy is dying?”

Taken by surprise, hesitantly, I simply said, “Why, yes.”

He then paused, and looked at me with a type of compassion and said, “Doctor, we really appreciate you spending this time with us and telling us about his test results, and all. But, you see, we already knew that Daddy is dying, he told us so this morning.”

The greatest power lies with the patient. If the one who is facing the end-of-life can clearly identify the path and the landmarks for his or her family, and if they will listen, then my role as healthcare provider becomes secondary and supportive, not primary and directive.

Mr Holmes’ family didn’t need my map, they had their own, and he gave it to them himself. My job was just to follow him and make sure his journey ended well.

Written for oktodie.com by Monica Williams-Murphy, MD
(As always, names and elements of these patient stories have been changed to protect the privacy of the patient and the family. Date of publication has no relevance to the date of the actual patient encounter.)