End of life treatment: Teddy got ice cream

Barbara Moran’s story:

I dreamed about Teddy Kennedy.  He had died a few days earlier, and his memorial services had blanketed the Boston news.  I was jealous of Kennedy.  He spent the last days at home, smelling the salt of the ocean.  He ate bowls of butter crunch ice cream, watched James Bond movies and shared dinner with friends. 

     I’m sure Kennedy’s death had its share of horror, but that didn’t curb my envy.  Teddy got ice cream; my mom got a sterile sponge soaked in warm ginger ale.  Ted got the ocean; Mom got a gritty rooftop with a windsock.  Ted got his own bed and movies; Mom got the blinking lights of the I.C.U. and the stupid C.A.R.E. channel.  Her TV didn’t even have good reception.

     She did not regain consciousness, and died the next morning. I made peace with her death, but not with her dying.  She had four months of endless and pointless and painful procedures, and final days full of fear and despair.  Why is this medicine’s default death for so many people?

Ken's Advice:  Have the difficult conversation with your oldest relatives.  Start like this:  while eating ice cream with them, tell them what flavor you want in your last meal, tell them about Teddy’s butter crunch, and ask theirs. 

Read a story about a ”http://patientadvocare.blogspot.com/2007/01/art-buchwalds-choice.html”>contented end of life.

Thanks to science writer http://www.writtenbybarbaramoran.com/”>Barbara Moran for her story, reprinted from today’s New York Times article, “Not Just a Death, a System Failure.”

Advance planning for the end of life: My answer to healing

Tory Zellick's story:

When we were much closer to the end of my mother's life, unbeknownst to us, she developed hypercalcemia [raised calcium level in the blood].  I was 24 at the time, and had already been her care partner for six years.  We'd started butting heads, as mothers and daughters do.  

Because of her shift in awareness, we started searching for a brain tumor.  Nothing was found to explain the change in her cognitive function.  To restore family balance, Dad whisked Mom away for a one one vacation.  While on the trip to Mexico, she got a urinary tract infection.  The kidney and liver can only process so much, so the calcium built up even more in her blood.  Her hallucinations continued.

We went to the Emergency Room of our hospital in Chico, California.  When admitted through the Emergency Room, you tend to deal with a hospitalist, not a physician who is familiar with one's illness/ailment.  We called her oncologist, who turned out to be out of town for the week.  But because we'd had the conversations with my mother, we knew she did NOT want cardiopulmonary resuscitation or a feeding tube.  We'd had the talk about the durable power of attorney.  She'd explained everything that she did and didn't want.  We'd contacted the lawyer, and had Do Not Resuscitate (DNR) and Do Not Intubate (DNI) orders already written.  We had a full understanding of what she felt was a good quality of life.  

As it became clear that end of life decisions needed to be made, we felt comfortable that we were fully prepared as a family.  We had what I call our "care team":  physicians, insurance broker, attorney, etc.  Being organized allowed me to have the information I needed at my fingertips to make appropriate decisions, and call the correct people when I needed certain questions answered, tests run, or scans compared.  

After comparing scans of Mom's liver over the past six-week period, it was apparent that the cancer had metastasized to her soft tissue, and that the hypercalcemia would be a quick and painless way for her to exit this life.  Quality of life was something she valued much more than time itself.   As a family, we decided to take her home and allow her to pass in the home she had raised her children in, as she had requested when we had the discussions about end-of-life when she was relatively healthy. 

This kind of situation can be overwhelming.  Your incredible, functioning brain will quickly begin to misfire.  But if you have everything organized, have had the difficult conversations about end-of-life and have the appropriate documents in order, it's much easier to make the decision best suited to the patient.

Years earlier, we'd been able to have the conversations about the end of life because my grandfather had been grappling with renal cancer for as long as I could remember.  My other grandfather had died when I was five, so we'd always talked openly about death. 

We weren't raised in any Western religion, but those who have some spirituality should contact their reverend, priest, etc., if they're looking for a guide to have such conversations.  We looked deep in ourselves to know what to do.  We sat in the living room, and discussed each of our wishes.  Our parents presented it to us that we should all know what everyone's wishes were.  An 18-year-old could get into a car accident and suffer a traumatic brain injury; this talk wasn't just for the oldest or sickest person in the family.  By incorporating the whole family and not just one ill individual, it helps by not isolating the patient about their own personal mortality.  It's not pointing the finger at any one person; it's something that everyone should do.

After my mother passed away, I created a workbook full of helpful tips and worksheets to help any caregiver avoid any unnecessary suffering.  It's my answer to healing, to help other people.  Either way, this journey will define you, when you're faced with a disease like this.

Tory's book, The Medical Day Planner: The Guide to Help Navigate the Medical Maze, provides insight and guidance to patients and their families and caregivers.  It's available at Barnes and Noble and Amazon.com.  Check out her website:  AllThingsCaregiver, and read another caregiver's story.

Thanks to Claudia Schou of Media Boutique for connecting us.

Choice of a healthcare proxy: By the flip of a coin

A close friend recently described the anguish he felt during his father's final days. His father had appointed both my friend and his older brother as co-proxies, not wanting to show favoritism. Unfortunately, the two sons couldn't agree on hospice care for their father. In the face of their disagreement, hospital staff assumed that by default, they should continue aggressive efforts to save the patient's life, and did so.

Advice to seniors: Choose one of your adult children to act as your proxy in case you are not able to inform hospital staff about your decision for care near the end of life. If you have two children, you can flip a coin, and notify the preferred proxy that s/he won a coin toss. (You may have to flip the coin more than once.) Tell the preferred proxy you'd expect him to consult the other family members prior to making a decision using the living will as a guide (unless the decision needs to be made quickly). That way, they'd gain the benefit of others' thinking, but will still speak with one voice to all the health care providers, to give them clarity about what they should do.

This should prevent any resentment from the child you have not chosen as the proxy.

See a story about a simple living will.

As though everything is a miracle

This week marks the fifth anniversary of Patient Safety Blog, which I began writing in December 2006. My purpose remains the same: to advise both family and professional patient advocates how to get the best health care.

The stories in the blog have been read hundreds of thousands of times, by readers from Algeria to Zimbabwe, by patients and world-renowned patient safety leaders. The most popular post was not about human health care, but about my dog Jackson's superlative healthcare - a model for human healthcare.

Jackson's tenth birthday is today, making him sixty-something in people years. He has been actively puppyish and in excellent health, until Saturday, when, in a sudden health crisis, a disk in his spine apparently ruptured. At this point, we don't know his prognosis. He could be like a middle-aged weekend warrior who throws his back out and then heals with rest alone. Or it could be something much more serious, requiring major surgery or even wrenching end of life discussions. It seems this has suddenly vaulted him into old age. We hope that he'll continue to get superb healthcare.

I'm heartened that tonight is the first night of Chanukah, which celebrates miraculous restoration. As a favorite aunt's holiday card quotes Albert Einstein: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."

Advice: Take a lesson in good health from Jackson: have a run or walk every day; get plenty of good sleep; love your family, and they'll pet you.

A lot of hurdles to jump: Do Not Resuscitate Orders

A story by healthcare blogger Patricia Walling:

A man I knew wrote a Do Not Resuscitate ["DNR"] order in his 80s, before a hip replacement. That's a form you can fill out with a physician's signature to ensure that you are not resuscitated against your will after your heart or breathing stops. In the order, he included a lot of hurdles to jump before the plug could be pulled.

Years later, when his physical and mental health began to deteriorate rapidly in his early 90s, things became chaotic and stressful both for him and his children. At that point, he was dying of prostate cancer and just wanted them to let him die. Unfortunately, he had neglected the critical step of reviewing the DNR order every five years. The DNR order he had written in his 80s did not address many of the issues that became critically important in the final months of his life.

Recently a movement has begun to rename these forms "AND" (Allowing Natural Death) to emphasize through medical coding that the doctor is allowing death, rather than withholding care somehow. Having a DNR can be handy if you have been suffering from a disease for a long time, want to avoid the violence of CPR at death (which can often break ribs and other bones, especially in the elderly), or just want to be allowed to die at home rather than in a hospital. Numerous studies have found that end of life care tends to be prolonged needlessly, inflicting pain on the patient and imposing financial and emotional burdens on both patient and family, and a DNR/AND can help to alleviate those issues.

Patricia Walling's advice: Make sure to review it in detail with your doctor, appoint someone as a health care proxy, and don't forget that sometimes your wishes may change.

In a bewildering scene: Redefining heroicism at the end of life

Bart Windrum's excerpt:
Heroicism lies at the root of the efforts we engage in to extend life. Without much questioning, we consider heroic activity to include resuscitation efforts, plus all those activities during those last weeks of life in which we pull out all the medical stops in the hospital. This "heroicism" invokes all the forces that make this time and this experience a crucible: all the emotional, spiritual, religious, medical-technical, moral, legal, and financial factors commingling in a compressed time frame.

As we've seen, the patient-family is caught up in a bewildering scene, subject to the array of problems unique to this time and place. We've explored those problems'' severe consequences.

Why engage in heroics? The obvious answer is because we don't want to die or our loved one to die. But why not, if we, if they, have lived full lives?

Less obvious answers relate to the role we give to heroicism in our lives. We may believe that it's our duty to fight to live. Some subscribe to religious beliefs regarding the sanctity of life, which governs the choices deemed acceptable.

Common to these beliefs is the largely unexamined notion that the only time and place constituting heroic action are the very last weeks of life under end-stage conditions. That's when we will engage in heroic activity to satisfy the requirements we believe we must satisfy.

But what if we have already satisfied those requirements? What if we've already acted heroically and have done so for years, perhaps decades?

I propose that the weeks of a terminal hospitalization are not necessarily the time for heroics. These weeks are beyond any requirement for heroicism. They represent a final phase of life, the transition to death (if we let it be), otherwise a time of last-ditch craziness if we pursue medical technology in a hospital setting. Medical professionals use the concept of futility. Futile it may be; crazy-making it most certainly will become.

The very good news is that accepting a reframe of what constitutes heroics does not deny heroics, for we have already engaged in heroicism! We've engaged in heroic action from the moment we first fight back against our first serious ailment!

Heroics begin when we undergo our first cardiac bypass. Or hip replacement. Or dialysis treatment. Or chemotherapy. We do not give up or give in.

No matter how ordinary any of these representative procedures (and others of similar extent) may be for professionals who conduct them, they are not ordinary for individuals undergoing them. Nor are the efforts and accommodations that follow. My father's last nineteen years represent a time of increasing heroicism: a repeat bypass ten years after an earlier bypass surgery; maintenance angiograms and angioplasties; years of pill-taking, including popping the occasional nitro for cardiac abnormalities; twice-daily management of water retention by the drug- induced shedding of copious amounts of urine—a process requiring two five-hour, home-bound sessions seven days a week to stay in proximity to the bathroom (meaning that Dad's out-of-house activities were scheduled around those sessions, every day, year after year), and more.

These and similar actions are heroic actions, and undertaking them satisfies the human imperative to fight for life and to sanctify the life we are given by Creation by not giving up on it.

During these years, everyone is heroic: the patient, the spouse who assists and accommodates lifestyle changes, the doctors who perform the procedures, the scientists who create them, the chemists who develop powerful medicines, and even the pharmaceutical companies that fund and make them available.

During these years, everybody is a good guy; everybody wears the white hat, so to speak. These are productive years, during which human bonds are cemented in memory as children become middle aged and next generations emerge into young adulthood—all witnessed, perhaps assisted, by elders whose socially productive lives have been gratefully extended by applied medical technology.

Once we stop and think about it, it's easy to see the heroicism in all who persevere in these actions, year in and year out.

And one day, each person so engaged will fail. "Crash," in medical parlance. She or he will take an insurmountable turn for the worse… from living with the disease(s) to dying from the disease(s).

That day either lands our loved one in the hospital or occurs during yet another hospitalization our loved one has embarked upon. That day, we get to choose what to do, and what not to do. That day, we decide whether to pursue curative treatment and how long to continue in the hospital, running the risk of enduring experiences we may prefer to opt out of. Or, to opt out of the path itself, and die in PEACE in a humane environment under nurturing conditions.

Or, we can choose in advance, coming to grips with our ultimate demise, and coming to peace with the rest of our lives.

Do you want a hospital to be the last place you inhabit on earth?

I imagine that the bravery required to choose against hospitalization (or rehospitalization), to choose to die in PEACE, is among the most heroic actions anyone can take. For those wanting to live the value of individualism completely, choosing against institutionalized dying makes intrinsic sense.

Read a short story about another father’s end of life decision.

Thanks to Bart Windrum for permission to reprint this excerpt from his book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization. Bart makes presentations to citizen, business, and provider audiences.

My father, my hero: Paul Farbstein

Today is the third anniversary of the death of my father, my hero, Paul Farbstein.

He waged a long fight with Parkinson's Disease, without complaining. Even this disabling and humbling disease did not pierce his characteristic calmness.

With my mother's help, he did daily stretching exercises. To keep some muscle tone, he used a Theracycle, a self-propelling exercise bicycle, which greatly delayed his need for a wheelchair.

Long before Parkinson's, he had written a living will to express his wishes, and opted against heroic measures. We brought him to a hospice in the final days, at my urging. At that point, the only thing I could give my father was a good death.

Advice: Live like Paul Farbstein.

Read another story about hospice care.

We had control over what happened: Pain control at a child's end of life

When Christine Reilly's little boy was being treated for cancer, she told his doctor she could handle almost anything. "The only thing I will not be able to tolerate is him looking at me and saying, 'Mommy, it hurts," she recalled.

Michael died when he was five years old, of alveolar rhabdomyosarcoma, which was diagnosed when he was nine months old. He pain was well controlled, especially at the end of his life.

Christine said once she and her husband knew Michael's cancer had spread, their focus shifted from curing the disease and having a child who could live a normal life to making sure he could have the most peaceful death possible. He died ten days after the family came home to Massachusetts from a trip to Disney World.

After they returned home, Michael's pain medications made him sleepier each day as his disease took its natural course. "We felt fortunate we had control over what happened," she said.

Dr. Joanne Wolfe and her colleagues just published a paper in the Archives of Pediatrics and Adolescent Medicine on this topic - the first paper that weighs parents' thoughts about the end of life for their terminally ill children. More than one-eighth of these parents considered hastening their child's death. Five parents said they had actually asked a caregiver to speed their child's death.

Advice to parents of terminally ill children: Use this study as a starting point for a discussion about end-of-life care for children. Explore all the options for pain control with your child's doctors and nurses.

Read a story about a plan for the end of life. Thanks to Elizabeth Cooney for the source story in the March 2 issue of the Boston Globe.

Take heart: Compassionate care at the end of life

Jay's story:
Nine years ago, my wife lost her battle with cancer. She also endured harsh, unfeeling treatment at work. The week we learned that additional treatment would not prolong her life, she came home in tears due to a nasty comment from a co-worker.

The next day, I accompanied my wife to her office and asked the supervisor for permission to address those co-workers. The supervisor was clueless about what had been going on. I said, "My name is Jay and I’m Jena's husband. I love her with all my heart, but we found out this week she is dying and there is nothing more that can be done.” The silence was deafening. I took my wife's hand, told her I loved her and said if she didn't want to work there anymore, she could come home so I could take care of her. With tears in her eyes, she replied, "Let's go."

By the time we arrived home, our answering machine was full of kind messages from her co-workers. The supervisor came by a week later to see how she was doing and informed us that three employees had been fired for "creating a hostile work environment."

My wife died in my arms six weeks later. She had forgiven them and so have I. To all the survivors out there, take heart. Every day that goes by will give you a little more strength to get through.

Advice to cancer patients facing tough choices: Follow love.

Read another story of another tough choice at the end of life. Jay's letter to Annie's Mailbox appeared in today's Boston Globe.

Unnecessary, painful and redundant: Costly care at the end of life

Margie Parko’s story:
During the last year and a half of my mother-in-law's life, her medical care incurred huge medical expenses as the quality of her life declined. She was in her late 80s, and many of the hospitalizations and tests she endured were unnecessary, painful and redundant. Her doctors did not communicate so her medications were often incompatible.

Thousands of dollars could have been saved if her medical records had been electronic and available to both the hospitals and the doctors who were treating her. I believe that in many high-cost areas, making minor changes in patient care and reducing redundancy would improve costs considerably.

Advice: Ask if the hospital has a computerized physician order entry system before you let a family member be hospitalized there.

Read another story about another unnecessary healthcare cost that an electronic medical record could have prevented.

Thanks to Margie for the source letter to the editor in the NY Times of June 10.

They strongly suggested we keep her in the hospital: Decisions at the end of life

When 32-year-old Rosaria Vandenberg lay unconscious in the hospital, a malignant brain tumor stealing her life, her brother decided to overrule her doctors' advice and bring her home to die. He believed, but he wasn't sure, that this was what she would have wanted. The truth is, when she was conscious, her family had never asked.

Back at home, Rosaria's two-year-old daughter, who had been afraid to touch her mother in the hospital, snuggled next to her in bed. Rosaria opened her eyes, the first time in a week, and took in the sight. She died the next night at home.

Her death made her sister-in-law, Alexandra Drane, realize that she had not thought about the kind of healthcare she would want at the end of life, much less discussed it with her family.

Such a conversation would have guided the family in the final days of Rosario's life. "When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home."

But her family could not get comfortable with the idea of Rosaria dying away from home and the daughter she so loved. In the end, the connection made between Rosaria and Alessia in the final hours was more than enough to convince the family that they had made the right decision.

Alexandra Drane wanted others to know that, so she launched Engage with Grace. Her website poses five questions for family members, e.g., "Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?"

Advice: Have the tough conversation with your family. It might help to show this to them to start the conversation.

Read another story about the decision at the end of life.

Thanks to Kay Lazar for the source article in yesterday's Boston Globe.

She signaled by blinking her eyes and nodding: An endurance athlete at the end of life

Barbara Warren, a champion endurance athlete in the over-60 age group, died in Santa Barbara, California on Tuesday, three days after crashing during the cycling portion of the Santa Barbara Triathlon.

She had broken her neck in the fall and was paralyzed from the neck down, breathing with a ventilator, when she signaled, by blinking her eyes and nodding, that she wanted the ventilator turned off.

"She wanted to leave," said her sister. "No athlete would like to have a life with only their eyes talking."

Barbara had competed 13 times in the Ironman Triathlon World Championship in Hawaii, winning it at the age of 60. The triathlon consists of a 2.4 mile ocean swim, a 112-mile bike ride, and a 26.2 mile marathon.

Advice to family members with gravely ill relatives: Honor the wishes of family members about the end of life.

Read another end of life story.

Thanks to Bruce Weber for the source story in today's New York Times.

For an audience of one: A hospice musician

As Judith Jackson recalls, last October "my mother was in her final week of life when Marcia [Feldman] came to play for her. It was a wonderful gift not only to my mother but to me. I was spending hour after hour sitting at her bedside, and then Marcia would come in and play this very soothing music. The nurses told me the last thing to go is the hearing. And my mother always loved that type of music."

Marcia, a classical guitarist, is a hospice musician. She has educated herself in the musical traditions of a variety of cultures, so that she can best match the music she plays to the heritage and preferences of the patient she is playing for. "Even when patients are too sick for verbal expression, the nurses can tell me when they are responding well to my music – their breathing may become less labored, for example," she said.

Marcia first began thinking about the connection between death and music when she lost her father 20 years ago. "His situation did not involve hospice care; he died suddenly. But something about the process of grieving for him made me think increasingly about the role music plays at our most troubling times," she said.

She has recently released a new CD, "Between the Worlds."

Advice: Consider bringing some music for your loved one in hospice care.

Read another hospice story.

Thanks to Nancy Shohet West for the source story in today's Boston Globe Sidekick magazine.

You can order her CD at CDBaby.com. I haven't heard the CD. I don't get any money for recommending this.

A "do it now" kind of guy: Slow medicine at the end of life

Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of "slow medicine," an approach that encourages less aggressive – and less costly – care at the end of life.

At the end of her husband's life, she was spared extreme options because she lives at Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School where it is possible – even routine – for residents to say "No" to hospitalization, tests, surgery, medication or nutrition.

Her husband, Charley Gieg, was 86 at the time, and was suffering from a heart problem, an intestinal disorder, and the early stages of Alzheimer's Disease when doctors suspected he also had throat cancer. A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. His wife doubted he had the resiliency to bounce back. She worried, instead, that the treatments would usher in a prolonged period of decline and dependence. This is what the Giegs feared even more than dying, what some call "death by intensive care."

During her husband's out-of-town consultation with a doctor, Edie stayed in touch by email with a nurse practitioner (NP) at Kendal.

"It is imperative that none of this be rushed! Think about all the what-ifs," wrote the NP. The doctors the Giegs had chosen, she wrote, “tends to be a 'do-it-now' kind of guy." The NP asked whether Charley would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate his dementia?

"Those are the very questions in my mind too," Edie replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.

Outside of Kendal, it is rare for patients and their families to make these vital decisions. As the chief medical officer for UCLA Medical Center explained, the culture at an acute care hospital "has a built-in bias that everything that can be done will be done." The pace of care at the hospital, he added, discourages "real heart-to-heart discussions." Once a patient is drawn into that system, "it's really hard to pull back from it."

Advice: Decide how you want to live your life – even at the end.

Read another end of life story.

Thanks to Jane Gross for the source article in today's NY Times.

Medicare could have paid for an entire preventive health program: End of life care

Dr. Sam Forman's story
My mother, Rose, was a 4'11" firecracker of South Philadelphia womanhood. She fit a disproportionate interest in humanity and a high decibel level into a small package. That came in handy when she worked during World War II as an inside riveter in the nether regions of B-24 Liberator bomber tail sections: she was a real life Rosie the Riveter.

Much later, in her 80s, she was struck by a heart attack. Over the course of a year, she became the consumer of a dizzying array of specialist physicians and nurses, high-tech diagnostics, cardiac surgery, novel pharmaceuticals, therapeutic devices, and specialty-care facilities. As the family member most suited to be her guide through the maze, I was struck by the providers of all stripes posed with hair triggers to unleash the most novel, the most innovative, and coincidentally the most expensive therapies. After initial treatment reversals leading to scant hope of returning to the independent life she treasured, the collective system would not hear the patient Rose's desires for a less aggressive, more personal and dignified approach.

After her ordeal finally ended, my siblings and I noted that what Medicare had spent on our mother could have paid for prenatal care in broad swaths of inner-city Philadelphia, or an entire preventive health program in some third-world country. All Rose had wanted was to pass on quietly to, as she viewed it, rejoin her husband, Akiba, who had died 10 years before. All the while, providers, institutions, and suppliers were doubtless counting their consumer scorecards. I suspect that the fruitless surgical interventions were probably counted as successes, given what I know about the definitions and time frames of such total quality measures in the increasingly consumer-oriented clinical world.

We can do better for Rosie the Riveter and, indeed, for ourselves and American society.

Advice: You can opt out of aggressive care. Consider hospice care for gravely ill family members.

Browse for related stories in the index at the very bottom of this page, or read an end of life story.

Thanks to Dr. Sam Forman for the source story, published in the Spring 2008 issue of Q3, a publication of the Yale School of Organization and Management.

Milkshake misdeed?: The ethics of tube feeding

Here's the thinking of Randy Cohen, the NY Times' ethicist, in response to a reader's question:

Question: My 71-year-old father lives in a nursing home, is confined to a wheelchair and is tube-fed. He understands the health risks of his taking food or liquid by mouth. (He got pneumonia this way.) When he was first admitted and asked me to bring him a milkshake, I refused. Now that I see he will eat whatever he wants, I’m inclined to give it to him. Am I more compassionate or less ethical?

Answer: You are more understanding. You always sought to help your father – compassionately, ethically. Experience has taught you different ways to do so. Milkshake or unshakable refusal? Either is permitted.

You might decide that refusing to bring your father something sweet and frosty is simply priggish. He is an adult, he is lucid, his risky conduct imperils only himself. You may make the case for prudence, but he gets to make the decision. And when he does, there's no dishonor in your acting as his agent and physically carrying out his wishes. By doing so, you honor his right to be an autonomous person.

In this, you have a luxury the nursing home does not. It must strive to preserve his life. You may be guided by a child's love for a father, helping him to have not the longest life but the most satisfying.

That said, your feelings, too, count for something. You might with equal integrity decline to abet his self-destructive actions – not out of a determination to extend his life but because you would feel horrible if you fetched the liquid instrument of his death. You are not required to bear the burden of guilt and shame that would come from handing your own father that fatal straw. You may honorably demur not only for this health but also for your tranquility.

Read another story about a patient’s choice of quality of life vis a vis medical care.

It is an intensely personal thing with me: Sen. Thompson's daughter & Terri Schiavo

In a news conference on Monday, former Senator Fred Thompson answered a question about the Terri Schiavo case:

"I had to face a situation like that in my own personal life with my own daughter [Elizabeth Panici]. I am a little bit uncomfortable about that because it is an intensely personal thing with me. These things should be decided by the family. The federal government and the state government too, except for the court system, ought to stay out of those matters.

"I was at that bedside. And I had to make those decisions with the rest of my family. No matter which decision you make, you will never know whether or not you made exactly the right decision."


Elizabeth had suffered from bipolar disorder and died in 2002 from an accidental drug overdose. Toxicology tests of her blood showed six times the lethal level of hydrocodone, a painkiller. She arrived unconscious at a Tennessee hospital, where staff revived her, and apparently placed her on life support. Mr. Thompson did not say who ultimately made the decision to withdraw her from life support. She never regained consciousness, and six days later, she was pronounced dead.

Advice to family members with a gravely ill relative: Consider hospice care as an alternative to life support in a hospital.

Read a peaceful end of life story, or read Marc Santora’s source story in today’s New York Times.

Paul Farbstein

My father, Paul Farbstein, succumbed last week at age 79 to Parkinson’s disease after a gallant, uncomplaining 15-year battle. He was content, and accomplished; he was loved, and loved his family. He found jobs for many people during the 30 years he ran an employment placement business. He served as the President of a Rotary Club chapter, working hard in Rotary International’s long fight to eradicate polio worldwide.

He was quite healthy for most of his life, but encountered some medical misadventures in his last few years. One of his stories (about “Raul”) appeared on this blog.

Hospice staff cared for him for the last two weeks of his life. Their care was greatly compassionate and respectful to him and his family members. His family and oldest friends were able to say good-bye and to get help in coming to terms with his loss. He received only the treatment that was necessary and appropriate, which is remarkably rare in our medical system.

Donations in his memory can be made to the American Parkinson’s Disease Association, for research.

Advice for those near the end of life: Hospice care can make a hard path far easier. In the Atlanta area, Hospice Atlanta (404-869-3000) has my highest recommendation.

Read Art Buchwald’s hospice story.