Compassionate, informed advice about healthcare decision making

Archive for the ‘Hospice’ Category

“Do Nothing” and “Last Minute Care”…Oh my!

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There is a lot of misinformation out there about palliative care and hospice. I just read an interesting blog post. In it, Dr. Cynthia X. Pan describes how she entered “palliative care” in Google Translate and got Chinese characters back. She then translated those characters back into English, and it came back: “do nothing care.”

Wait… there’s more. She did the same thing with “hospice” and it came back as “last minute care.”

This not just a problem with Google Translate or the Chinese language. A lot of people think this about these very appropriate and helpful medical care approaches. I remember back in my nursing home chaplain days when I was just getting my start talking to patients and families about “No CPR” orders I learned an early lesson.

Families and patients hear, “No Care” when you say “No CPR.” They might say, “You mean when mom is dying you are going to just do NOTHING!”

We do lots for dying patients

So, I started leading the conversation with “We do lots for dying patients. We keep them clean and dry. If they are having a hard time breathing, we clear their airway and give them oxygen. We give them pain medications. You can be here to comfort your mom, even get up in bed with her. We just are not going to beat on her chest when her heart stops. That is what the ‘No CPR’ order is about.”

But like Google translator many people hear, “palliative care” and think “do nothing care.” Palliative care is very aggressive keeping a patient comfortable and meeting social and spiritual needs.

Likewise, so many people think hospice is for the last day or two of life, even though Medicare offers to cover a patient for six months (or more). Late referrals are a real problem in hospice. We do our best work if we have, at least, weeks if not months to care for a patient. More time means better pain control, getting the most appropriate equipment into the home, more time for social and spiritual support.

So help me get the word out there. Palliative care is LOTS of care and hospice care is MONTHS of care.

Update: Google Translate seems to have fixed both translations. Progress!

Is Alzheimer’s a Terminal Disease?

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I say yes.

I have sold over 3 million copies of my book Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Disease. Only once, in the 25 years since the First Edition came out, I received a complaint from a reader who took issue with my claim that Alzheimer’s Disease is a terminal disease.

They told me, “You don’t die from Alzheimer’s. You die from something else like pneumonia, or a stroke, or cancer.”

Advanced dementia leads to what finally takes the patient

But I say, in most cases, the advanced dementia leads to what finally takes the patient. For example, pneumonia is a very common cause of death for these people. The end stage of Alzheimer’s is marked by increased eating difficulties and increased frequency of fevers. Getting food or fluid in the lungs can lead to pneumonia that can lead to death. 50% of advanced dementia patients who are hospitalized for pneumonia or a fractured hip are dead within six months.

There is even a recognizable “end stage” of this disease. Persons in the last phase of Alzheimer’s qualify for hospice benefits under Medicare. Families and physicians often modify the goals of medicine for advanced dementia patients. It is not unusual for a family to decline the use of antibiotics to treat pneumonia. This is an accepted standard of care.

It is helpful to think of this being considered terminal

In my view it is helpful for people to think in terms of this condition being considered terminal. You think in terms of how to best keep the patient comfortable rather than curing everything that comes along. It encourages everyone to do the emotional and spiritual work to prepare for dying.

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We Didn’t Want to Put Him Through That Again

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I just got off the phone with the widow of an old friend of mine. She called to let me know her husband died last week. I hadn’t heard. He was 70. Alzheimer’s.

I’m not sure he knew me

I last saw him in October on my way to a speaking engagement near Orlando. This was the week before he entered a memory care unit. I’m not sure he knew me. He told stories and laughed like he always did but his words made no sense.

We had grown up in the same neighborhood and I followed him three years behind to the University of Florida. He played baseball, me football. He went into law, me the ministry. Over the years I would stop by and we would go fishing. He loved to fish the lakes.

His wife told me he died from aspiration pneumonia. A very typical way for advanced dementia patients to go. They get food or fluid in their lungs and an infection follows. Often these patients are treated with antibiotics and the pneumonia is cleared up. Then the decline of the patient continues and they get pneumonia again, etc., etc.

“We didn’t want to put him through that again.”

They refused antibiotics and called hospice. She told me he died the most peaceful death.

Around Christmas he had gone into the hospital and “it was a horrible experience.” “We didn’t want to put him through that again.” They didn’t.

I told her she did the right thing. I said, “It is so routine to put the people in the hospital, pump antibiotics into them and they are saved only to get worse. I cannot say enough good things about how you handled this. It is so out of the norm but in my view the best of care.”



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Blind Spots

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Missed diagnoses. Denial. Blind spots.

What do they have in common?

It started a year ago. I was fishing behind my house on Goose Creek. I threw out a top-water lure—a “popper” in fly-fishing speak—and I saw two poppers instead of the one I had tied on my line. “That’s not right,” I thought.

“Mr. Dunn, I think you have had a stroke.”

So I went to an ophthalmologist and after many tests she said, “Mr. Dunn, I think you have had a stroke.” Then it was off to the neurologist and retina specialist, both of who ruled out stroke. The retina guy did say the retina in my right eye was tearing. There was nothing they could do about it at the time but we’ll, “keep an eye on it.”

In June the eye went black. I had two emergency surgeries to reattach a detached retina. Seems to be holding . . . which is the good news. The bad news is I am basically blind in the right eye. Light is coming in but the vision is very blurry and it probably cannot be corrected with a lens.

The double vision thing is still going on . . . most noticeable while driving. Often I put on a pirate patch on the eye to block out the distorted vision altogether.

I have learned a wonderful lesson about the human brain through all this. Most of the time I barely notice the blindness in my right eye. My brain basically ignores the bad eye and seems to dwell on the good information coming from the left eye. I function very well on one eye.

Doctors also have gaps in their knowledge

We know physicians sometimes fail to make a proper diagnosis and treat a patient for a condition that is really not the problem. Doctors also have gaps in their knowledge. Thaddeus Pope recently blogged about “Critical Gaps” in the legal knowledge of doctors practicing end-of-life medicine.

Like a good eye, they go with what they know. If there is an area of medicine for which they are unfamiliar they turn a blind eye toward it. The good eye is working so well.

In hospice and palliative care we see the oncologist who continues to recommend chemotherapy for a dying patient even though it offers no benefit, perhaps even makes life worse for the patient. They are blind to the benefits of stopping the chemo and shifting to improving quality of life in palliative care or hospice.

Patients and their families sometimes use denial as a blind spot. A patient is dying but no one considers death as a possible outcome of the current the disease. Believing that continued life is the only option they are “blind sided” when the patient dies.

Don’t get me wrong. Denial can serve a very good purpose for a time in helping people cope with a fatal prognosis. But it does bring in a huge blind spot in how one might spend their last days.

Review of Two “Hospice” Media Events

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Here is an article reviewing a This American Life radio program featuring a hospice nurse and an HBO special about a hospice in a prison. Well thought out observations about both identifying with dying patients and NOT identifying with them.


No Downside to Entering Hospice

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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.


“You can flunk out of hospice.”

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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?”

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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?

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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.

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