Let’s talk about dying

Lillian Rubin lives and works in San Francisco. She is an internationally known writer and lecturer, who has published twelve books over the last three decades. Last evening her latest essay appeared in Salon. It’s brilliant and a must read.  This courageous woman breaks open a discussion we are all literally dying to have. But so much in popular culture avoids and even prohibits this essential death talk. I commend Lillian for breaking this cultural taboo. Perhaps now others in the media will do likewise.

Lillian Rubin

Complete Article HERE!

End-of-life care, talks help folks die well

By Dr. Andrew Ordon

As doctors, we are taught that death is the enemy. We are here to stop it and if a patient dies, we have failed. That mentality has led to an alarming statistic. According to one study, 60 percent of your health care dollar is spent in the last 30 days of life. Wouldn’t those resources be better spent on prevention and defeating curable diseases earlier in life? Why do we try so hard at the very end? One reason is that we think we can defeat the disease and gift the patient with more time. But there are times when that is not a reality.

One obvious example is the terminally ill. People with Stage 4 cancer. That means they have a cancer which has spread from the local area to a distant location. Cancer starts out in one place, and if it is isolated there, it’s called Stage I. If it erupts from its local area but has not spread to lymph nodes it is Stage 2. If it has spread to nodes but has not spread beyond the region of origin, it is Stage 3. If it has traveled by lymph or through the blood stream to a distant organ, that’s Stage 4, which is as bad as it gets. This is when doctors tell you how long they think you have left.

In a study published in November in the Journal of Clinical Oncology, 1,231 patients with Stage 4 lung cancer were evaluated for their End of Life (EOL) experiences. They considered “aggressive” care to be things such as receiving chemotherapy in the last 14 days of life, ICU stays in the final 30 days and an acute-care hospital stay in their last 30 days.

Researchers found that patients who had EOL discussions before the final 30 days were more likely to receive appropriate hospice care than those who did not have EOL discussions.

The authors wrote: “Given the many arguments for less aggressive EOL care, earlier discussions have the potential to change the way EOL care is delivered for patients with advanced cancer and help to assure that care is consistent with patients’ preferences.”

I have overseen the hospice care of a relative and can tell you firsthand that it is far better than having no plan in place. Hospice nurses and doctors treat the family as much as the patient. But arranging for hospice care sounds a bit like giving up. It isn’t. It’s acceptance of the reality that we all make this journey. Hospice care is merciful and compassionate.

The time to discuss end-of-life care is before the end is near. It is possible to die well.

Complete Article HERE!

End of life options worthy of attention

By Joe Timmerman

Death is a very difficult topic to discuss. It’s not a subject that most people enjoy pondering. It is especially difficult to discuss with someone whose death may be imminent. Like many issues, it might be easier to just avoid the topic altogether. However, as is often the case, pretending the issue doesn’t exist won’t make it go away, and can often make the end result more difficult to deal with. Thus, the news the Madison medical community will start providing end-of-life planning as a standard patient service is welcome, indeed.

End-of-life planning involves sitting down and coming up with an “advanced directive.” An advanced directive is essentially a set of written instructions regarding a patient’s preferred medical care that are carried out in the event the patient is no longer able to make those decisions. For example, a patient might specify that, if they should enter into a vegetative state, they should be taken off the ventilator and allowed to die.

Preparations for death, such as end-of-life planning, are becoming increasingly accepted in the medical community. According to guidelines published by the American Society of Clinical Oncology, all terminally ill patients should sit down and discuss their end-of-life wishes with their family and health care team.

Advanced directives are beneficial for a variety of reasons. To begin with, people should have their health care administered according to their own preferences. If someone wishes to be kept alive on a ventilator, then he or she should be able to. If someone wishes instead not to be put on a ventilator, then they shouldn’t have to be put on one against their will. Just because someone can’t communicate his or her preference doesn’t mean it shouldn’t be honored. Either way, this is utility enhancing for the patient.

As for the health care provider and the patient’s family, they aren’t forced to make life-or-death for someone else. Making these decisions are, as one might expect, extremely taxing, and everyone is better off if the patient makes his or her own decision ahead of time rather than leaving it to a third party. In a powerful Time Magazine article, Joe Klein recounts his difficult experience making these decisions for his own parents. As he writes, “I spent the next five months as a death panel for both my mother and my father.” He later writes he was “extremely fortunate” to transfer his ailing parents to a health care provider that was much more willing to candidly discuss death.

Coming up with an advanced directive also helps to keep health care costs down. CBS News reports Medicare spent $50 billion in 2009 on doctors and hospitals over the last two months of patients’ lives. The kicker? “20 to 30 percent of these medical expenditures may have had no meaningful impact.”

Over the course of one year, Medicare alone spent as much as $15 billion of treatment had no positive effect on patients’ quality of life. This is a prime example of wasteful spending that, in today’s age of fashionable austerity, needs to be eliminated. A significant portion of this spending could be eliminated if people were only kept alive as long as they wished to be.

It might seem that doing anything less than everything to extend a person’s life would be unethical. However, if the person doesn’t want to be kept alive though extraordinary measures only to suffer for longer, their wish should be honored. This can only be accomplished through people having candid discussions with their families and doctors. The fact that local health care providers are starting to encourage these discussions is good news for all Madisonians.

Advance Directives are the beginning of care, not the end

Jerome Groopman, MD, FACP, and Pamela Hartzband, MD, FACP

One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.

In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.

Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.

Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.

This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”

After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.

Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.

This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.

The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.

The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.

This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”

Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”

Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.

Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.

Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.

Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?

Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.

While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.

Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.

Complete Article HERE!

Burdening families with CPR decisions in the face of futility is cruel

by MONICA WILLIAMS-MURPHY, MD

Those who know and work with me have heard me state without hesitation that it’s morally wrong to do CPR on 90-year old great grandmas. So, it was with great relief that I read the “Do Not Offer CPR” option in a recent JAMA article urging a revision of our present approach to the use of CPR for those who are unarguably at the end of life.

This is a change from the present expectation of CPR no matter what, to a set of recommendations that incorporates the question of whether CPR “harms or helps” individuals. Finally, some sanity.

Medicine attempts to balance patient autonomy with the grand directive: “First, do no harm.” Recently, I have also discovered that as a doctor, it is also my job “to do no harm” to the families and surrogate decision makers of those in my care.

Last week, I learned that even asking families to make CPR or DNR decisions in the face of almost certain death creates unnecessary harm for them as well. In the following case, I created a decision-burden for a family that they neither wanted, needed, nor could handle—a decision-burden that would not change the outcome (death), yet would likely trouble them for the rest of their lives.

This case drove home to me another compelling reason why CPR should not be offered to those who are imminently dying: not only does the act of CPR harm the dying patient, the actual act of asking the families to make futile CPR vs DNR decisions harms them as well.

Mr. Gray was an 80-year old great-grandfather of 12. For years he had taken a blood thinner for his heart condition, without any complications, until 3 days before I saw him.

3 days prior, he had fallen and hit his head, developing a large bruise across his forehead. Despite his family’s urging, he had not gone to a doctor to get it checked out. Instead, he went about his daily activities, bothered only by a mild headache. This headache suddenly became severe on the 3rd day and he began to vomit. Immediately after vomiting, he became confused.

No more messing around, the family called 911. Mr. Gray was now too confused to argue or refuse a medical evaluation.

EMS loaded him up easily enough though, and told the family to follow them for what would be a short ride to the hospital. The ride was short enough, but something terrible happened during the transport-Mr. Gray fell unconscious and stopped breathing.

What ensued on arrival to my ER was high-end aggressive emergency care: he was intubated, placed on a ventilator, we placed multiple IVs, gave mannitol, ordered emergency plasma and ran with Mr. Gray to the Cat Scanner, all within minutes.

I tapped my foot impatiently awaiting the images of his brain to load up on the computer.

“Darn it,” I muttered when I saw the pictures confirming what I had already clinically diagnosed and begun treating. A large hematoma had developed on his brain. According to the radiologist there were already signs that his brain was herniating.

Just then, I got a call from the lab. Mr. Gray’s blood thinner levels were toxic. It would take hours to correct this before Mr. Gray could even go to surgery, and what Mr. Gray did not have was hours to wait. What he did have was a large, loving and very concerned family whom I had yet to talk to in detail.

I spoke with the neurosurgeon before I gathered this family. The specialists said that due to the blood thinner toxicity, the delay would most likely make the injury unsurvivable — meaning, we expected him to die.

I let out a long sigh and said, “Yeah, that’s what I thought.”

Hanging up the phone, I braced myself to talk to the family.

When I walked into the family waiting area it seemed to be standing room only. I asked those who could to take a seat. Sitting or standing, everyone leaned forward, anxiously, with expressions mixing dread with hope.

No matter how many times one has done this, these conversations are never easy. First, I gave the general explanation of what had occurred and how bad things looked for Mr. Gray. I explained that surgery to remove the hematoma could not be performed until the blood thinner problem was corrected and that this wait would most likely prove to be “too long” for him.

Tears began to flow. Children grabbed the hands of parents and siblings looked at each other in shock.

Next, I outlined all of the “doctor-driven” decisions that would be made and explained possible outcomes. If A happens then we can do B, but if C happens then B is not an option.

Then, finally, I laid the most serious decisions on them. How would Mr. Gray die, when his time comes? Would they allow natural death by withholding CPR? Would they request an attempt at CPR? Finally, would they consider withdrawing artificial life support measures.

Already grief-stricken, I watched their eyes glaze over in fear and pain as I gave them these final options and explained that eventually we would need to have a family decision on these choices (in the absence of a pre-selected decision maker to speak for Mr. Gray).
Looking around the room at heads hung low, there was deep silence. I stared at my feet, not looking at them in an attempt to give them space for thought.

But in that quiet moment, something shifted within me. I began to feel ashamed that I had even asked such questions at all. In that moment, I began to understand that the burden I had given them was too great and complex. I was asking them to participate in choosing his death, a task that they clearly did not want- something they obviously had never discussed. And, saddest of all, after pressuring them for an answer, this answer was not going to change the outcome for Mr. Gray-he was still probably going to die and all that they would have gained from this situation is a persistent guilt burden about whether they made the right choice or not.

Suddenly, it became so clear to me that this should not even be their burden at all. In that moment, I grew to understand that it was wrong to even ask families to make such decisions in futile circumstances – that should be my job. I should be the one who guides them through this time by saying, “CPR will not bring him back to who he was, it will not help him, it would only cause us to do further damage to his dying body. Because of this, we will not perform CPR on Mr. Gray when his heart stops, but we will care for him in every other way. We will make sure that he is comfortable and that you are with him. Now is your time to say, ‘Thank you, I love you, and good-bye.’”

I lifted my head. Looking around the room, I saw the strain on everyone’s faces and knew more than ever before that the way we practice end-of-life medicine must change.

Mr. Gray and his family, taught me first hand that it is cruel to burden families with CPR decisions in the face of futility. This type of decision-making should be built into medicine. It should be part of an end-of-life algorithm that is created and supported by the entire medical establishment for 3 reasons in addition to those cited in the JAMA article:

The maxim of “first, do no harm” should be extended to not just the patient, but also to the families of the dying patient in our care. We should not harm their emotional lives and consciences by asking them to make decisions about CPR that are ultimately futile. Such a burden is pointless and creates unnecessary suffering.

The Patient Self Determination Act of 1990 states that a patient or patient representative has the right to refuse or accept any medical procedures offered to them. This is the legislative back bone of modern concepts of patient autonomy. Presently, CPR is the default option and is therefore automatically offered by the medical system. But, as we learned from Mr. Gray and his family, there are times when this is inappropriate. I support the position of the JAMA article: “Physicians should not offer CPR to the patient who will die imminently or has no chance of surviving CPR to the point of leaving the hospital.” (Like Mr. Gray, whom we expected to die within 24 hours). Instead, we should spend our energies focusing the patient and families on creating comfort, peace, and closure with their remaining time together.

If the entire medical establishment agrees to create and adhere to guidelines outlining the exclusion criteria for CPR, like exclusion criteria for thrombolytics in stroke, then it cannot be argued that not offering CPR is a violation of patient autonomy. A patient or family cannot demand a procedure that is not offered when it is considered medically contraindicated.

In the end, it is we doctors who need to shoulder the burden of CPR decision making in futile situations. It is the burden for which we were trained, the years of experience caring for the dying, the hours of studying statistics and outcomes. We cannot in good conscience guide all other life-sustaining medical decisions then suddenly shift all death-determining medical decisions back to the family … it is a burden they are not equipped to bear and one they may never shed.

Complete Article HERE!

Death Is A Hard Sell

I had a very interesting weekend. On Saturday, June 2nd, I attended a day long event at the Fred Hutchinson Cancer Research Center. The program was titled: Moving Beyond Cancer to Wellness.

It was a great program full of interesting workshops. There was also a small vendors area. A bunch of cancer-related agencies set up tables and on them they displayed their brochures for the programs and support they offer people living with cancer.

I thought this would be the ideal setting for networking with other like-minded folks, so when I visited each of the vendors I introduced myself and proudly handed the person at the table a copy of my book. The reactions were nearly always negative or at least alarm. Once the person saw the title, The Amateur’s Guide To Death and Dying; Enhancing the End of Life, the smiles that greeted me when I first approached the table soon turned to dismay. Their reaction to the book was as if I had handed them something disgusting.

It was immediately clear to me that bringing a book about death and dying to a cancer survival event was a huge faux pas. Despite my protestations that the work their agency was doing and the information in my book were very much alike. The only difference being their outreach is disease-specific, while my book is about mortality. I wasn’t able to convince them.

So ok, I get it. Death is a hard sell to the disease-specific crowd. Apparently contemplating one’s mortality, even when it is staring us in the face is not the politically correct thing to do. But why is that? Facing our mortality doesn’t undercut a person’s commitment to fighting his/her disease process. I contend that consciously facing the prospect of life’s end really helps put our effort in fighting a disease into perspective.

Curiously enough the reaction I got from the other participants at the Moving Beyond Cancer to Wellness event was much different from that of the vendors. I think most people who encounter their mortality through a disease process, like cancer, know, deep down inside, that this could be the beginning of the end. Why else would people react as they do when they get a diagnosis?

The other participants at the event, the ones I showed my book to, had a much less phobic reaction to it. I contend that this is because they’ve already put themselves there, at death’s door. This sort of takes a lot of the sting out of death.

Were they any more enthusiastic about taking a long hard look at their own mortality? Probably not. But then again, they weren’t as resistant to the idea as were the ostensibly well people manning the vender tables.

I try to imagine what things would be like if we all were encouraged to examine the end of our life, much in the same way as women are encouraged to do a periodic breast self-exam. I mean, examining one’s breast for lumps, or other abnormalities doesn’t increase your risk for breast cancer, right? Neither does facing one’s mortality in a conscious, upfront way hasten death.

Finally, on Sunday I met with a young couple for their weekly couple’s counseling session. Once we were all settled in, I handed them a copy of my book. (I just love watching people’s reactions.) The young man spoke first. “That’s a bit scary.” He said after he read the title. “Scary, I mean for the people who need this book.” I replied, “I suppose it is. But you know what’s even scarier? Not thinking about the end of life before it’s too late. I mean, are you certain that you’re not among those who need this book? Are you certain that you will live to see the end of the day?”

Death is a hard sell in our death-denying culture. Yet, each of the people I encountered this past weekend will, in time, face the end of their life. That’s a given. The big question is; will they have the time or even the inclination to face their mortality in a way that will enrich their lives as they live it to the end?