Hospice | Hank Dunn

Compassionate, informed advice about healthcare decision making

Archive for the ‘Hospice’ Category

No Downside to Entering Hospice

Posted August 26, 2013 by kbrachle

I know it is hard. Symbolically, it is huge. Emotionally it is tough … that is … entering a hospice program.

By definition, going into hospice means, in the physician’s estimate, the patient is within six months of dying. Practically speaking, with the median length of time in hospice under 20 days, it could be much less than the six months.

I can understand people not wanting to go into hospice

I can understand people not wanting to go into hospice. “Hospice means I am dying. I don’t want to die. Therefore, I will not go into hospice. Therefore, I will not die.”

I am writing about this because of a friend of mine who has just signed up for hospice. He has been battling cancer for years. The burdens of living are getting harder but he still lives at home with his wife.

He wrote this recently about enrolling in hospice:

“I am signed up with Hospice. The more we found out about their services, the more helpful it seemed to be for us. It will provide important backup, so we don’t have to run to the ER on a Friday night and wait for six hours, as we did recently with an infected lesion on my neck. If the Hospice nurse cannot help us on the phone, a nurse will come out, even in the middle of the night. We have had three visits in the last two days! We are impressed with their promptness and efficiency. My wife is also finding comfort in the backup for her, and a place to answer any of her concerns/questions.

“Hospice has also given me a medication to increase my energy and one to help with my cough.

“The new piece for me is that if I stabilize or improve, I can always leave Hospice, and re-enter later if I need to. I had thought that once you signed up, it was a permanent commitment.”

This is a move that has no downside

I wrote to him:

“This is a move that has no downside, in my view. If you die in this current course of this illness then you and your wife will have all their wonderful support. If you get better and no longer qualify for hospice care then you will have had their support when you needed it and they can always come back.”

I thought it was interesting that he did not know you can leave a hospice program and come back in. This way he can still have hope for improvement but if things do not get better he will have all that support, hopefully for months.

There is no downside to hospice.

Hank

“You can flunk out of hospice.”

Posted July 18, 2012 by kbrachle

I am the last person they want to meet. Actually, they would rather not meet me any time. Hospice chaplain.

I remember walking into a nursing home room to meet a new hospice patient. He was in his 60s and had a brain tumor. I gave him a friendly smile and said, “I’m Hank, the chaplain from hospice.”

With a terrified look he gasped, “Oh God. No!”

I sat down and asked, “What do you mean by that?”

“I don’t want to die.” A very honest and understandable answer.

He was so disturbed by my presence I decided to spend this first visit just getting acquainted and, perhaps, lower his anxiety a little. I told him just because you are in hospice you don’t have to die. I said, “You can flunk out of hospice.” It doesn’t happen often but occasionally people actually improve and no longer have a life expectancy of six months or less, which is the prognosis needed to qualify for hospice care.

It is very normal to fear death

Sadly, “I don’t want to die,” were among the last words I heard him say. I made several more visits to see him but the tumor creeping through his brain took away his ability to speak after that initial conversation. I so wanted to explore what was behind his fear of death. It is very normal to fear death but each patient has their own unique spin on it.

There are many obstacles hindering people from getting into hospice care but I think getting over our normal resistance to accepting a terminal diagnosis is a major hurdle. Here is how the logic goes … “Hospice means I am dying. … I don’t want to die. … Therefore, I won’t go into hospice and not die.” Truth is most people die outside of hospice care anyway so staying away from hospice does not keep one alive.

They are going to die with or without hospice

I was inspired to write about admission into hospice because a recent issue of The Journal of the American Medical Association (JAMA) has a “Patient Page” on the topic. JAMA is mostly for physicians and other healthcare professionals but they offer “patient pages” as a resource for lay persons. You can download a one page summary about hospice free from their website.

I advise medical personnel outside of hospice to emphasize the positive aspects of hospice as they counsel patients about end-of-life care. Hospice can help people stay in their own home and provide help for the caregivers. Medical equipment and many other expenses are covered under hospice. You have pain control experts available to offer comfort. Emotional and spiritual concerns are addressed with social workers and chaplains.

Sure. The patient is seriously ill and will probably die in the near future. But they are going to do that with or without hospice.

Illustration by Maria Fabrizio

“How did your mom feel about her dementia?”

Posted January 11, 2012 by kbrachle

I have just spent the last days at my mom’s bedside, in meetings with physicians, having discussions with hospice nurses, and in dialog with my brother and sister. Mom has been on a downhill slide for seven or eight years . . . probably Alzheimer’s.

“I don’t like what is happening to me.”

Her’s was a very normal course of the disease. At first she lost things. She asked the same question every five minutes. She made scores of contributions to bogus “charity” organizations—something she had never done before. She voluntarily, although reluctantly, gave up driving. As these incidents started to repeat themselves, more than once, mom said, “I don’t like what is happening to me.”

Then she had to stop volunteering at the Moffitt Cancer Center . . . a job she loved for 22 years. There were trips to the hospital. During recovery from one such trip she said, “I think it is time to move into the assisted living.” My siblings and I jumped all over that and made the move in a few days.

She got her strength back and took to walking again. Most of the time it was quite harmless. But she did end up at nearby shopping mall once. Worried for her safety we agreed mom needed an alarm device attached to her ankle to keep her from wondering out of the building. If she approached the door an alarm would sound. Very embarrassing for her. She told the assisted living staff after several of the attempted escapes, “I wish I had a gun. I would kill myself.”

Of course, psych evaluations followed each of these outbursts and upon examination mom could not even remember saying such a thing or the embarrassing alarm that led to her despair. She got more depressed. Drank more wine. Lost interest in activities.

After she fell and broke her pelvis in the spring she entered hospice care.

So we moved her to be closer to my sister in Boulder, Colorado. We found a great dementia care center where she has lived the last fifteen months. The wanderings ceased to be a problem partly because of the layout of the building and partly because her mobility became so limited. The ruthless disease led to a general decline in her health. After she fell and broke her pelvis in the spring she entered hospice care.

So typical, in my experience, she actually improved after hospice got involved. The dementia moved forward but there was some upturn in her general health. Then it happened as I had expected. She fell and broke her hip. We refused a trip to the emergency room. They brought in a portable x-ray and confirmed the diagnosis. What to do next?

Thousands of elderly folks fall, break a hip, have hip surgery, go through rehab, and walk again. My sister found a story on the internet about a 105-year-old woman who successfully went through this course of treatment and fully recovered. Mom was only 92.

But mom did not have the mental capacity to rehab even if she could survive surgery. Oh . . . and she wasn’t walking unassisted BEFORE the fall. Why the hospital, the surgery, possible infection? For what end? Half of advance dementia patients who receive such surgery are dead in six months or less. My years as a nursing home chaplain taught me anecdotally that a hip fracture was the beginning of the end for most nursing home residents. My suspicions have since been confirmed with the research.

“How did your mother feel about her dementia?”

So my sister and I sat with a very competent, no nonsense, physician, Dr. Rogers, to plan out the course of treatment four days after the fracture. He started the conversation with a question. “How did your mother feel about her dementia?” My sister told me later she did not get the point of the question. I was thinking, “This guy is good.” He wanted to know mom’s opinion of her condition before the fall. We told him about “I don’t like what is happening to me,” and “I wish I could kill myself.”

He said, “Okay. Here is what we are going to do.” He looked at the very long med list and said, “We are going to stop all these medications except the morphine and add a drug for anxiety. We will offer her fluids but not force anything on her. Comfort is our goal.” He took mom’s desire to be free from a life with a mind that had been lost as an advance directive for comfort care only. We had no wish to hasten death or cause it. We were just letting things be.

Why would we think the patient would want to be saved from death?

If a patient is not happy with their life before a crisis, why would we think they would want to be saved from death? Death will happen to all of us. And when we are burdened with years of disability, disease, and dementia, why oh why would we want to put off the death we welcome? I can’t tell you the number of patients, in the same situation as my mother, who are rushed to the hospital and their lives are saved for months or years of ever worsening conditions.

The doctor hesitated and referred to me as the “chaplain of death.”

I had a patient once at the nursing home whose dementia had advanced to the point where he did not know his wife, wandered the halls, and urinated in the corners. He had a long and proud career in the FBI and was now reduced to living most people’s worst nightmare. I suggested to his wife that she speak with the physician about a “No CPR” order. She reported back to me that when she requested the order, the doctor hesitated and referred to me as the “chaplain of death.”

I was shocked. Here I had done the hard work for him in addressing the emotional and spiritual issues and sent a caregiver to him requesting what, in my view, was a most appropriate order. If this patient could see himself and have a right mind, I am certain, and so was his wife, that he would welcome death. His heart stopping was the only way to be free from the dementia ravaging his mind.

God bless the Dr. Rogerses in this world who start with trying to establish how the patient feels about their condition. If the patient would see death as a welcome release then the treatment plan that allows a natural, timely death to occur would only make sense.

Mom died peacefully eleven days after the hip fracture.

Hospice Care Too Long?

Posted July 6, 2011 by kbrachle

Is hospice care costing our nation too much because some providers are caring for patients who are not terminally ill?

That is the question addressed in research conducted by the Kaiser Family Foundation and the New York Times and published in the June 28^,,2011 edition of the Times. Hospice programs are reimbursed by Medicare a set amount each day they care for a patient. The amount depends on services required for the average patient with a particular terminal condition. For a patient to qualify for hospice care a physician has to certify that, in all likelihood, the patient will probably die in six months or less. If the patient is still alive after six months then the physician can recertify that six-month or less prognosis.

People staying too long in hospice care? The average length of stay in hospice care from admission until death is 17 days. That means when you add the number of total days Medicare pays for and divide by the number of patients receiving hospice care the average is 17 days. Whether or not hospice providers are taking advantage of the system by seeking out patients who will likely live longer is a question beyond my expertise.

Seventeen days is not a long time

My interest in this study is what is implied about the other end of this equation. With the average stay in hospice of 17 days and if some patients are inappropriate because they are likely to live beyond the six-month prognosis, then there are a heck of a lot patients who are “too-short-stay.” Seventeen days is not a long time when the original intent of the hospice Medicare benefit was to provide quality end-of-life care in the last six months of life.

The short-stay patients (one to three days, for example) are the hardest to give the highest quality care. These patients obviously have very advanced diseases and either the patient, family, or physician waited until the last minute to opt for hospice care. So you have a patient and family with the greatest need and only a day or two for the hospice to provide for their needs.

Turns out, it actually is very expensive for a hospice to get all the services in place. Without going into the details too much, a lot of staff time is needed to admit a new hospice patient such as setting up medical equipment in the home, buying medications, completing paperwork, and other administrative costs. But the hospice is reimbursed at the daily rate that is much less than what they actually have to spend. They lose money on these short-stay patients. They are glad to provide this service and can do it because they know other patients will be in the program longer and thus they can recover some of those costs.

These late-referrals have great physical, emotional, and spiritual needs.

These late-referral patients and their families have great physical, emotional, and spiritual needs. Dying three days after admission means, most likely, they just accepted the terminal condition of the patient. Perhaps they were in denial and hoping for a cure. Their hopes have been dashed and the patient is in the most frail condition. They look to hospice to “make it better.” Not provide a cure, but to make the death as peaceful and pain-free as possible.

My experience, which makes this purely anecdotal, is that occasionally hospices are unable to provide the quality care just because of the press of time. Perhaps, they couldn’t get the pain under control immediately or emotional and spiritual needs were left unmet. So, at times, you have an angry family because their and the patient’s needs were not met. From the hospice program’s viewpoint it was impossible to provide for these needs on such short notice. And the hospice makes the least amount of money from these patients. I have a theorem for this situation. It goes like this:

“The amount of anger and hostility of a family directed toward hospice is inversely proportional to the amount of financial reimbursement the hospice receives.”

Yes, perhaps some patients are staying in hospice care too long. I will leave that for others to sort out. But I know far too many are not in hospice care long enough. I am not sure how we get individual patients and families to seek hospice care sooner. Generally, our health care system focuses on cure (most often appropriately) rather than comfort and quality of life.

My wish would be that people would make that switch sooner from cure to comfort care only.