In my last blog I told the story of two physicians. Dr. Rogers took care of my mother in the last months of her life. He is among the best of doctors for this phase of life. [...]]]> There are the best of doctors for end-of-life care and the worst of doctors for end-of-life care.

In my last blog I told the story of two physicians. Dr. Rogers took care of my mother in the last months of her life. He is among the best of doctors for this phase of life. The other doc, I’ll call Dr. Smith, was among the not-so-good ones. I will repeat my short story

. . . 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 was 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. . . .

I am sure Dr. Smith is a fine doctor in many ways. He probably took good care of this nursing home patient. He just seemed uneasy making the shift to “comfort care only” as this patient moved toward the end of his life.

What makes the difference between the best docs and the ones who have room for improvement?

First, Dr. Rogers was more patient-centered. He tried to ascertain what my mother would have wanted and how she felt about her current condition. “How did your mother feel about her dementia?” he opened the conversation.

I wasn’t in the room with Dr. Smith and the wife of the advanced Alzheimer’s patient at the nursing home, but it appears like he was more interested in treatment orders. If he had just stopped to inquire about what the patient might have wanted, he could have spared the wife from feeling like she was asking for a death sentence.

Secondly, Dr. Rogers offered his professional opinion based his experience and a “best practices” approach at the end of life. Once he had us establish what Mom’s feelings about advanced dementia were, he told us what was needed to reach the goals of mom’s care.

The wife of the Alzheimer’s patient needed the advice of a doctor who could tell her about the limited effectiveness of CPR and the appropriateness of a “No CPR” order. She got that information from me and the doc belittled my contribution.

Lastly, Dr. Rogers saw death as the inevitable end of the course of treatment following my mom’s fractured hip. He could not stop her death although he could have recommended a treatment plan that could have prolonged her dying. She could have been sent to the hospital for hip surgery, IVs, and perhaps a feeding tube. She could have been with us for a longer amount of time. But she was going to die sooner or later as a result of this fractured hip and the advanced dementia.

Dr. Smith seemed to think death could be stopped or at least postponed. If he read the medical literature he should have known that CPR offers no hope of saving the life of this patient. Good medical care has a lot to offer patients at the end of their lives. Dr. Smith could have sought to keep the patient comfortable rather than trying to stop death with resuscitation attempts.

The Dr. Smith’s of this world are not bad people . . . maybe not even bad doctors. They just need to see death as part of life and that the physician has a role in making a passing as comfortable as can be.

Hers was a very normal course of the disease. [...]]]> 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.

Hers 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 that 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.

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.

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.

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 condition.

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.

Not the procedure ON me but my awakening to the fact that some widely used treatments have little benefit for vast numbers of patients.

I became a nursing home chaplain in 1983 with no experience in healthcare. I was introduced to the standard practice of performing CPR on all [...]]]> CPR did it for me.

Not the procedure ON me but my awakening to the fact that some widely used treatments have little benefit for vast numbers of patients.

I became a nursing home chaplain in 1983 with no experience in healthcare. I was introduced to the standard practice of performing CPR on all patients without a pulse unless they had a “Do Not Resuscitate” order. Actually, at our nursing home, the order was “No CPR.”

That language choice was intentional. The DNR order implies that if you use the procedure the patient would be resuscitated. It was presented as a choice for the patient or family. “Would you like us to resuscitate your mother?” In fact, less than 2% of nursing home residents who receive the procedure have their hearts restarted with CPR. So our order was more honest. “No CPR” meant we would not perform the procedure. You weren’t choosing between resuscitation back to full health or death. There was no chance the procedure would work therefore you were choosing between CPR attempts and no attempts. I tell people this is not a “life and death” decision. It is a “death and death” decision. The patient will die no matter what the choice is but one is choosing the nature of the death.

In recent years some facilities have stopped using “DNR” for this very reason. Other terms are gaining in use. DNAR for “Do Not Attempt Resuscitation.” My favorite is AND for “Allow Natural Death.” This implies we are not withholding something, we are just allowing the natural processes to reach their expected conclusion. Letting be.

Cardio Pulmonary Resuscitation started in the late ‘50s as a means to restart otherwise healthy hearts which had failed. Drowning victims or those who have had accidental electrocution were good candidates. It originally was never intended to be applied on patients where death was not unexpected. Slowly, it made its way into all healthcare facilities as a standing order against death.

[As an aside, I would hope, in the event of sudden cardiac arrest, my children or grandchildren would have CPR attempts. I do not have the same hope for my 92-year-old mother with Alzheimer’s.]

Now, even after decades of “improvements” in the procedure and research into its effectiveness, CPR has been shown to be totally ineffective on large groups of patients. And we know before we start who some of these patients are. CPR offers no benefit to: patients in the terminal phase of an illness; patients who cannot live independently (all long term nursing home patients and assisted living residents); and patients who have multiple medical problems in advanced stages.

Why?

Why do we attempt to resuscitate a patient when we know ahead of time it will not work?

One of the reasons is that many physicians do not know the truth and/or fail to inform patients or their families about the ineffectiveness of CPR in a particular case. Conversations to inform patients and families take time and can be emotionally laden. So some physicians take the easy road and never have the conversation or just ask, “Do you want us to resuscitate your mother?” without informing the family that the attempt will not work.

Another reason for widespread use of resuscitation attempts are the unrealistic expectations of the general public, often influenced by television portrayal of patients being rescued by paramedics or hospital personnel. A few years ago study analyzed how CPR was depicted on popular TV shows. On “Rescue 911” 100% of resuscitation attempts were successful, when in the real world only about 15% are successful on all patients. No wonder families inform physicians to “try everything” when they have seen “everything” on TV and it works all the time.

An even greater reason CPR is performed on patients who will not benefit are the emotional and spiritual issues surrounding the No CPR order. I had a nursing home patient who was failing and near death. He was still a “full code,” meaning everything should be done to save his life including resuscitation attempts. I spoke with his daughter and explained the ineffectiveness of CPR on patients like her father and that our medical director recommended a No CPR order for all such patients. She said, “I know CPR will never save my father’s life, but it is just so hard letting go.”

CPR has become a symbolic gesture. In many cases we know it has no medical purpose. Yet it allows patients and families to maintain the illusion of holding on, the illusion of control. They can’t let go or let be.

Later in my career I learned of other ineffectual treatments like IV hydration for dying patients or feeding tubes for advanced Alzheimer’s patients. These have their own illusions for doctors and families but are symbolic gestures only with no medical benefit.

As a pastoral caregiver I see a great opportunity for ministry with those who say they want to “try everything” in face of certain death. There is something else going on when people say they want a resuscitation attempt when they know it to be ineffectual. I say, “Tell me more about wanting CPR. That is a very unusual request for someone in your condition.” The tears and the words come forth. “I am afraid of dying.” “I don’t want to lose mother.” “I hope to reconcile with my father.” These are real issues but CPR attempts do not address them.

Beating on someone’s chest will not take away their fear of death nor reconcile them with a family member. Perhaps a chaplain, social worker, or clergy person could help. Please, somebody tell these people the truth and deal with the real issues behind resuscitation attempts.

I am here visiting my mother who is closer to the end of life with Alzheimer’s. We moved her here from Tampa a year ago so my sister could be an “in-town” caregiver. My brother and I travel to Colorado every few months to see mom and support my sister, he from [...]]]> Boulder, Colorado

I am here visiting my mother who is closer to the end of life with Alzheimer’s. We moved her here from Tampa a year ago so my sister could be an “in-town” caregiver. My brother and I travel to Colorado every few months to see mom and support my sister, he from Florida and me from Virginia.

I say “closer” which is not such a helpful term as we all are closer to our dying than we were. So we are all “dying.” Every one of us will die sooner or later. But thinking of us all as “dying” may not be helpful in making treatment decisions.

We make different medical choices for the young and healthy than we do for the old and infirm. When we are young and otherwise healthy, aggressive medical treatment to cure a cancer caught in its early stages seems quite appropriate. Wait a minute! I thought I said we are all dying so why would we treat a dying person to cure cancer. See . . . thinking that we all are “dying” is not so helpful in making treatment decisions.

So mom, age 92, has been going through the stages of dementia for at least seven years. We have taken over her finances, her medical treatment decisions, even the move to Boulder was all ours. We didn’t even pretend that she had a say in the matter.

When do we say she is dying? I have observed in my years as a healthcare chaplain that we reserve the word “dying” for the last hours or days of a person’s life. Sometimes we even say a patient is “actively dying” which is a strange oxymoron. Often this type patient is nonresponsive, not eating nor drinking . . . doing nothing . . . and we say actively dying. What’s that about?

I now characterize my mother’s condition and those like her as being in “the last phase of life.” This phase can last from hours to years. Like my father before her, my mom indeed has been in this phase for years. Being in the “last phase” informs our decisions about her care. Our goal for her at this stage of life, following her instructions, is to prepare for a comfortable and dignified death.

My friend Dr. Joanne Lynn instructs her physician colleagues to ask themselves, “If I heard that this patient had died in the next six months, would I say to myself ‘I am not surprised’?” If someone’s death would not be surprising then they are in the “last phase.” In addition, they probably would qualify for hospice.

Decisions are easier in the last phase when we are looking to prepare for a comfortable and dignified death. Hospitalization, CPR, surgery, a feeding tube . . . all highly unlikely to be compatible with a comfort goal.

Medical decisions may be easier but the emotional and spiritual work continues. It has been hard to watch our once vital and fun-loving mother wither into a shell of her former self. We have been grieving. But we are very much at ease with the goal of comfort care in this last phase of life.

That is the question addressed in research conducted by the Kaiser Family Foundation and the New York Times and published in the June 28th edition of the Times. Hospice programs are reimbursed by Medicare [...]]]> 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^th 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 quality 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.

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.” 17 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-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 they 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.

That basically was the question posed to me by the daughter of one such patient two months ago. Her mother had died four weeks earlier. She had read my book Hard Choices [...]]]> Is failing to put a feeding tube in a dying Alzheimer’ s patient starving her to death? The short answer is no.

That basically was the question posed to me by the daughter of one such patient two months ago. Her mother had died four weeks earlier. She had read my book Hard Choices for Loving People for the first time seven years ago. That was four years after her mom had been diagnosed with Alzheimer’s Disease. So for eleven years her mother was on that long, slow decline toward her final days. Her death came after a stay in the hospital when the family agreed with the physician’s recommendation to provide comfort care only and not insert a feeding tube.

In the months leading up to the hospitalization this daughter spent five to six hours every day at the nursing home helping with her mother’s care. Most telling for me, it sometimes took two hours to feed her mother. This is so common for the end of dementia patients like this mother. They choke and cough in an effort to clear their airway. Occasionally, these eating difficulties lead to pneumonia. Finally, these patients just lose the ability to swallow.

As difficult as it can be, studies have shown that these hard-to-feed patients can be successfully and safely fed. Even so, when all efforts at careful hand feeding fail it is a sign that the last days of a patient’s life have arrived.

The daughter went on in her e-mail to me: “Since that time [of her death], I have felt extremely guilty. All my sisters still feel we did the right thing by following the wishes Mama expressed in her living will, but I struggled, and still struggle, as the living will she signed was 14 years ago. Mama may not have lived very long if she had a feeding tube but, then again, it may have given her years of life since I was with her so much of the time to ensure she got good care.”

I know this is hard but the research is clear. Feeding tubes do not add one day to the lifespan of advanced dementia patients like this mother. From all I can tell from this correspondence this patient did get good care. Comfort care, palliative care, and hospice care are quite appropriate for advanced dementia patients. Give them ice chips or sponge swabs dipped in water to quench their thirst. Give them a loving touch and spiritual support. There are a great many measures we can do to ease the suffering of an Alzheimer’s patient’s last days. Inserting a feeding tube is not one of them.

Last Friday I was speaking at the Centra Hospital in Lynchburg, Virginia. In the room were fifty or so clergy types along with physicians, nurses, social workers and just plain folks. I divided my presentation with the first [...]]]> “I made a mistake. Made the wrong decision,” the wife of the recently deceased man said.

Last Friday I was speaking at the Centra Hospital in Lynchburg, Virginia. In the room were fifty or so clergy types along with physicians, nurses, social workers and just plain folks. I divided my presentation with the first half devoted to helping patients and families make end-of-life decisions. Later I turned to the emotional and spiritual issues at the end of life.

A lady raised her hand and told this story. She has a friend whose husband had been in a nursing home and on a feeding tube. He was not considered to have the capacity to make his own medical decisions so all the medical treatment decisions rested on his wife. On more than one occasion the patient pulled out the feeding tube.

This friend suggested to the wife that perhaps the patient was saying he did not want the feeding tube. The wife always responded, “He doesn’t know what he is doing.” The tube was always reinserted and the feedings were resumed.

About six months after the patient died the friend was visiting with the wife. The wife said, “I made a mistake. Made a wrong decision. I should have left the tube out and let him die sooner.”

At times I have heard other family caregivers express similar regrets about decisions that were made. “We shouldn’t have sent mom back to the I.C.U.” “I wish we had never started the feeding tube.” “We kept the chemo going way too long.”

When I hear remorse like this I always tell people, “You can never make the wrong decision. You make the best decision you can with the information you have at the time.” I have never, in my 28 years of being close to decision-makers, thought someone made a decision with the intention of harming a patient. People always want the best for the patient. It is only in looking back that they say a decision was a mistake.

I even say “you can’t make a wrong decision” to people who are in the throes of a decision-making process. I hope to ease the burden they are placing on themselves. These choices can be hard enough. I want to assure these burdened families they can’t make a wrong decision. You just do the best you can with the information you have at the time.

One thing for certain . . . the fact that patients and families often struggle [...]]]> How to start a blog about end-of-life decisions? I have been professionally dealing with these issues for 27 years. I have written endlessly on the subject. I have lectured up to eight hours in a single day on topic.

One thing for certain . . . the fact that patients and families often struggle with decisions about medical treatment at the end of life will not go away.

A story became a metaphor.

“I’ve got to make a life-and-death-decision about my mother by Thursday,” the teary-eyed woman said to me on a Monday morning. She volunteered once a week at the nursing home where I was chaplain. She wanted me to help her.

We found a place of quiet. “Tell me what is going on?”

“My mother is in a hospital in Virginia Beach and is on dialysis. My brothers and sisters and I have to decide whether or not to withdraw the treatment and let her die.”

“Has you mother been sick for a while or did she all of a sudden go into kidney failure?”

“Oh, her health has been going down for some time. She has had two strokes in the last two years and now her kidneys are shutting down.”

“What do the docs say? Is the treatment doing any good?”

“They don’t think it is doing any good at all.”

“Did you mother ever give any indication what she would have wanted in a situation like this?”

“Mom said she never wanted to be on dialysis.”

I am thinking, “What’s wrong with this picture here?” In my mind the obvious choice was to remove the patient from dialysis. I told the woman as much.

I said, “This is not a hard decision. Of course, you take your mom off dialysis for all the reasons you just gave me. This is the end of a long decline in her health. The docs say the treatment is not doing any good. And your mother said she never wanted to be on dialysis. Of course you take her off.”

I wanted to know more. “What is going on here that makes this decision so difficult?”

At that point she began to cry, “I think I am feeling guilty because I haven’t visited mom enough.”

When she said “guilty” I knew she was moving into my area.  . . . I’m a Baptist. I know we think we have more guilt than other persuasions. Of course, there are the famous Catholic and Jewish forms of guilt. Fair or not, religions often encourage guilt feelings. Although she did not say her religious beliefs led her to feel guilty I felt more at home as a chaplain in the face of such deep emotion.

The metaphor the story became is this: For patients and families end-of-life decisions have little to do with medicine, ethics, law, religion, or morality. For them these decisions are primarily emotional and spiritual in their nature.

It is not that medicine, ethics, law, religion, and morality have no part in medical treatment decisions. They are a huge part, especially at the end of life. As we enter our final days or months often the resolving of these issues points toward withholding or withdrawing certain treatments. Then the big question for the patient or family is “can I let go?”