"Death is not Optional"
Palliative Care and Hospice

by Dr. Bob LeFevre
Modesto, CA
December 15, 2006

Editor's Note: Bob's sensitive feature originally was scheduled to run last month but was held so that the Aspen Mini reunion material could be posted. The question then was whether a caring piece about death and hospice was appropriate for the holiday season. Your editor asked his wife, Alice, who said she thought that it was the most meaningful time of year to feature this subject. I sent Bob a note asking his opinion. He wasn't sure but asked his wife, Mary, who is a hospice volunteer. She felt the same way as Alice, so trusting the good judgment and sensitivity of our wives, we offer this caring and insightful article about end of life issues as the feature for our final posting of 2006.

Death is not Optional, Bob LeFevre
The day Mom died, the branches cried

No one likes to talk about it and certainly no one wants to think about it, but even us Yalies are mortal. What, you say, impossible! We kick ass and no one is going to get us, but alas, death is not optional, even in the United States. Barring an acute accident or sudden illness, most of us will slowly fade.

My mother, at age almost 94, did just that. But she did it as gracefully and as elegantly as she had lived. Mostly she was at home, except for the last three weeks. Then, surrounded by family, she resided at the Hospice house of the Western Reserve on the shores of Lake Erie. It is, I believe, fair to say that we die as we live. If you are a grumpy old fart you will get grumpier and fartier. Regardless of your personal quirks, our time at the end can be one of phenomenal and sometimes exponential growth. This is not always easily accomplished, but having the assistance of a palliative care team or Hospice can be of immense help.

Death is not Optional, Bob LeFevre
Mary LeFevre on her 93rd birthday

Our life is our book, and how we write the last chapter depends on whether we know we have turned the page that puts us into this timeframe. Unfortunately, the medical profession is unskilled at helping us get a clue that perhaps we should be on a different track. This is not completely illogical, since physicians spend their careers trying to stamp out disease.

Is failure to be successful in eluding death every time really failure? Much of what physicians are taught is that the death of a patient is failure. Somehow this was subtly infused into our veins during our training. Also, if a physician's challenge is to cure, and cure is not possible, then you, the patient, need to be put aside so we can move on to the next challenge. "I'm sorry Mrs. B., there is nothing more we can do for you." Such poor and insensitive communication is the unfortunate reality too much of the time.

Physicians look at people as diseases, and yet when it comes to delivering bad news, they don't say, "Your disease is no longer responding to therapy. However, there is much I can help you with as we go down the road together." This better approach helps to start the process of redirection of hope and lets the person know you will not abandon them.

In addition, in this day and age, most doctors cannot afford the time to engage in meaningful dialogue and address so many critical issues that lurch out at us, our families and our loved ones. Unexpected dramatic issues and thoughts spring out of nowhere, overwhelm us and are often left unaddressed or suppressed.

Perhaps good dialogue is suppressed by family pressure. I will never forget when 30 years ago I had a patient with cancer of the prostate. The family was adamant — "Don't tell Dad!!" Well, the patient knew, his inner self knew, and from my nurse I learned that the patient himself wondered why I was not honest with him. That was the only time I did that.

Exactly the opposite event happened six months ago. An engineer in his forties, with an unusual mouth cancer and no longer able to talk, elegantly penned in blue ink his questions on a white board. After answering several of my questions, and I his, he wrote, "Am I going to die?" My answer as I sat facing him on the edge of the bed was "Yes". His response was "Thank you for being honest." Are exchanges like this difficult? You bet. But when given with compassion, they help people move to the next level and begin to live the best they can and write a chapter in their book that will be meaningful to all who participate and remain.

Well, so much for the introduction. Are there teachers to help us create the best ending possible? The answer is yes. Originally the movement to make end of life more pain-free and meaningful came out of the Hospice Movement, which was started in England by Dame Cicely Saunders. Hospice came to the United States with the first hospice in, of all places, New Haven, CT.

As a consequence of the sudden loss of my second wife, I became a founder and medical director of our local hospice in 1980. It was one of those blessings that arise out of tragedy.

Without my years of experience, I would not have been able to push hard for hospice involvement in my mother's care. Mom was the grand dame and was in charge. We had talked many times over the years, and Mom had a clear advance directive: that when there was no hope of recovery she wanted no heroics. In the year prior to her death, she had three hospitalizations, for things like urinary infections and pneumonia. Each time, with some IV's for a couple of days, she bounced back, never quite as good, but sharp nevertheless.

About three months before her death, she lost interest in the newspaper and in following baseball (the Cleveland Indians were her team) and needed things repeated more. Two months later, during our weekly Sunday call, she could not maintain the conversation. When the call came that she was no longer eating, we flew to Cleveland, and this time, two days of IV's only caused swelling in her legs. For the next three weeks, Mom savored a few bites of chocolate ice cream and occasional teaspoons of water. She slept most of the time, but when awake she would visually track us and occasionally make her wishes clear. When my wife Mary moved Dad's picture to a spot we thought was better — "Don't move that!" came blaring out of her mouth. Tired, yes — but still in control of things that really mattered.

Death is not Optional, Bob LeFevre

She threatened to die multiple times during those three weeks, but chose a bright sunny day at 2:05 PM to slip softly to another plain, with just her two boys at her bedside. As a long time hospice doc, I did not want to play doctor. I just wanted to be a son and laugh and cry. Hospice allowed me to do this and gave Mom superb care.

Yet more than a quarter of a century since the first hospices appeared in the U.S., and with thousands of hospices now around the country, there is still reluctance to have a loved one enroll in hospice. Hospice is, however, about life at a time close to the end. Early use of hospice can reap huge benefits from the support of the interdisciplinary team. Such support is critical, since all suffering is a combination of emotional, physical, social, spiritual and cultural interplay. Late referral to hospice is like having to take a final exam with one day to cram, having ditched all classes and spent too much time at the tables down at Mory's. The beers were great, but you can be left sucking foam if you did not participate in class.

Just released are data from a large Medicare study which show that in spite of thousands of hospices in the country, futile treatments prevail. For those of you who like numbers, 12% of cancer patients received chemotherapy in the last two weeks of life. This is an increase from 10% in 1993. Admissions to ICU's have increased from 8% to 11% in the last month of life. In addition, last-minute admissions to Hospice (in this case, 3 days before death) increased from 12% to 15%.

Reality needs to be addressed honestly and early, and hope needs to be redirected. There is a time to stop. Although it may seem easier to continue chemotherapy than have a frank discussion about hospice and palliative care, failure to have those discussions promotes false hope.

Hospice is a wonderful benefit, and Medicare guidelines qualify people if they have six months or less life expectancy IF THE DISEASE TAKES ITS EXPECTED COURSE. This is important because this allows people to reap the benefits of highly skilled people coming to deliver care for even longer periods of time, if the patient does not die according to Medicare guideline timeframes.

Just like Art Buchwald, Mom at one point was discharged from hospice. She had been on hospice services for six months but rallied, so we signed her off. However, Mom continued to show signs of change — more sleep, less social interest, and decreased food intake.

There is, however, still a major fear of the "H" word. There are some restrictions under Medicare for using hospice, which includes a person having to no longer be undergoing active treatment. This is where palliative care comes in.

Palliative care now is a broader concept that brings critical comfort measures to patients even while they are undergoing therapy. Still remaining key to the process is a team of physician, nurse, social worker and chaplain, to help families and patients deal with putting things in order. Symptoms of pain, nausea and fatigue can be addressed. Because patients and families are the unit of care, they can be supported in decisions to stop treatment when the burdens outweigh the benefits.

Fighting the inevitable only takes away from the legacy that individuals can pass on. Talk about your values now, not later. Fill out an advanced directive. Pick the person who will be your spokesperson. Even specify who you do not want to speak for you. Avoid the Terri Schiavo circus. Do you really want some politicos interfering? Remember, even if you have had these discussions, your surrogate decision-maker will get it right only two-thirds of the time. Thus, revisit your wishes to be sure everyone understands.

How to predict decline is something doctors do poorly. But some simple guidelines are — If a person is requiring more frequent hospitalizations or ER visits, or has recurrent episodes of pneumonia or urinary infections, they are failing. If a person with a chronic illness is sleeping more, eating less and their activities are declining a prognosis of 3 months is likely.

The timeframe of the changes is important. If changes are occurring on a month-to-month basis, they have months. Week-to-week changes indicate weeks, and day-to-day changes mean hours to days. With Mom's strong constitution even at 93, her "days" turned out to be three weeks. Bless her heart — this gave us time to grieve in advance so we were stronger at the end. It gave her time to ask us "What do I do now?" She always wanted everything to be just right. We could say simply that it was important to rest; we love you; we are going to be fine; the grandchildren are OK; we are here with you. Her last breath was, I am convinced, accompanied by a peaceful smile and knowledge in her eyes that there was light beyond.

Death is not Optional, Bob LeFevre

(Bob's email address is relefevre@sbcglobal.net.)