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“If the entire materia medica at our disposal were limited to the choice and use of only one drug, I am sure that a great many, if not the majority, of us would choose opium; and I am convinced that if we were to select, say half a dozen of the most important drugs in the Pharmacopeia, we should all place opium in the first rank.”
Disabled, chronically abandoned
(Sign held by a young woman protesting in front of a pain clinic shuttered by the DEA last week)
Often in nature, a substance is found (or some believe God has placed a substance) that has serendipitous properties in humans. One of the first instance of humans discovering this was with the milky substance found in a flower now known as the poppy. Thousands of years ago, someone (we think an Arab adventurer) for whatever reason ingested that the milky substance in the “proto” poppy plant and found it relieved his pain. For the next thousand years, through cultivation and trial and error the opium poppy was born in China. Papaver somniferum.
Pain is a funny thing in people. It is a mechanism almost all of God’s creatures have to tell them that if they stay in their current situation bad stuff might happen to them. One of the things we are taught in medical school is how to get people to describe their pain. We tell students to get people to use a 1-10 scale with “1 being a paper cut and 10 being an elephant sitting on your chest.” Did you know there are a lot of people whose paper cuts are a 10? Once the situation has resolved, we have chemicals in our body that connect with the pain receptors (there are 4 such receptors, with mu being one) to relieve the pain and give pleasure. The opium poppy, which likely could only move back and forth and doesn’t need a lot of pleasure materials, has been bred to have 12% of its latex made up of these pleasure drugs (morphine, codeine, and to a lesser extent thebaine which was used to make hydromorphine).
Having a drug that reduces pain is lucrative. Having a drug that causes pleasure is more lucrative. In the 1800s, German scientists were able to extract pure opium from the poppies. Although available for pain relief, the larger market was in euphoria production in shops (mostly in China) using water pipe technology. Ironically, it was declared illegal in China (where the poppies were grown) but was smuggled by the British into China and sold to the opium dens to offset the imbalance of trade they found themselves in from importing tea. Only fair, I suppose.
We don’t need flowers today. Thanks to the God-given ability of humans to reverse engineer, the world produces about 700 tons of narcotics. Most of this medication makes its way to the US. We have 5% of the population and account for 99% of the hydrocodone use in the world (active ingredient in Vicodan), 83% of the hydrocodone use (active ingredient of Oxycontin), and 37% of the world supply of Fentanyl. We consume twice as much per capita as the next highest nation. Within our country, even, there is much variation with Alabamians consuming 2 1/2 times (1 1/2 prescriptions per person) as much as Hawaiians. The misuse of these drugs contributes to 17,000 deaths annually, as many as ovarian cancer but without a ribbon to raise awareness. Deaths aside, there is the problem of diversion. Many people get a prescription for 90 Vicodan, take 60, and sell 30. There are willing markets of buyers and many physicians are unaware that their sweet little elderly lady patient (who has the medicine in her urine) has a side business.
It turns out opioids have a downside. They are addictive, meaning that they cause aberrant behaviors on people unable to get access to the drugs by buying pills from the guy down the street. They cause a physical dependence. People who are suddenly denied access will suffer from physical symptoms such as nausea, vomiting, and profuse sweating. Chronic use results in tolerance, meaning that it takes an increasing dose to get the same effect. If you are going to create a market, what better product to sell?
As detailed in this New Yorker article, this problem has been a long time coming, and we in the healthcare field are complicit. Beginning in the 1980s, scholarly articles encouraging the addition of narcotics to our inadequate pain treatment regimes have been published. Some very smart people believed that treatment of chronic, non-cancer pain with opioids could work “with relatively little risk of producing the maladaptive behaviors which define opioid abuse.” In the 1990s makers of legal narcotics (Purdue in particular) began marketing their products to physicians and patients as safe for everyday ailments such as neck and back pain. With a team of 5000 sales people, a bonus system that encouraged “market growth,” and the assistance of the Joint Commission which began requiring hospitals to evaluate and treat pain, over $1 billion worth of Purdue’s Oxycontin was sold in the US in 2000.
So, God placed this wondrous drug in the proto-poppy for what reason? If used correctly, say for the pain associated with metastatic cancer, it is truly a miracle. If used by people to mask the psychic pain of living in America and written by physicians who are just too busy to talk to their patients, it is probably not what God intended. If given by physicians to folks in exchange for sexual favors thus feeding their addiction it is almost certainly not what God intended.
Perhaps God put the proto-poppy on earth to test physicians. We can make a lot of money selling these poppy derivatives but we can also get in big trouble. The test for us is to use it correctly.
I had to go into the hospital and round this weekend. I also had to go in and round two weekends ago (we treat holiday weekends separate from the regular rotation so it just fell that way) and was feeling particularly sorry for myself. Fortunately it has been a light weekend so far (wait…there is a saying in clinical medicine… “they can always hurt you more” … with doctors being a very superstitious lot and me still having 12 hours to go, I retract that last statement). It has been an OK weekend. I did have several observations worth commenting on occur in the course of the weekend:
1) Personal connections are powerful – I have a long-term patient, Mr A., who has multiple problems and was admitted on Thursday to the ICU. He was transferred to our service on Saturday and I rounded on him. The residents told me that he was not doing well, being a bit confused. When I walked into his room and when I walk up to his bed and inquired about his health he looked up, smiled, and said “Doc, I’m doing well. How are YOU?” I responded that I was doing well also and he then asked “And the wife? Your two children? LSU gonna win that baseball game?” Confusion resolved. To be honest, I have tried working with this patient for a long time to get the diabetes, hypertension, and other chronic problems under control. In my mind I have not given Mr A his money’s worth. It may be that as a result of our personal connection, he has done better than he would have done without me.
2) Wound care trumps antibiotic choice, every time – Ms B was admitted with a badly infected laceration following a fall. She had been in the hospital for several days and there was a flurry of antibiotic changes prior to the weekend. My philosophy is typically when covering for the weekend to follow the plan of the weekday team. In this case, it was clear that the weekday team was hoping that changing antibiotics would make up for a lack of attention to the wound. The weekend resident worked to optimize healing of the wound and it looked much better after 24 hours. The lesson there is while we have a lot of antibiotics in our armamentarium, often we need to find an old fashion barber surgeon.
3) Dementia is a terminal illness – We are all going to die. I hope to die at the age of 85 immediately after finishing the Boston Marathon (not only making for a great story but leaving my children with a messy transportation problem to deal with). It is my experience that very few of us will be so lucky. Most of us will drift away with multiple chronic illnesses, hopefully receiving less and less marginally useful care as we get closer and closer to death. We now have the ability to replace kidney function, provide artificial nutrition, and provide respiratory support. We do not have brain replacement therapy. Let’s acknowledge the finality of dementia and forbid the replacement of feeding tubes rather than repeatedly trying to make families say “Yes, I want my loved one to die” when the patient keeps pulling it out. Clearly, death is not a choice.
4) Patient care at its best is fun – Medicine at its best is a collegial activity. Multiple smart people get together and problem solve on behalf of a patient who has a complaint or condition that is either bothersome to them or that we’ve decided will become bothersome soon. In an article from the New England Journal of Medicine about money and the changing culture of medicine, the authors identified that “money” put barriers in the way of collegial patient care. As they say “Once money enters the conversation, selfishness comes along with it.” The fun thing about rounding on the weekends is that my thoughts and those of my colleagues are often not on the bottom line. We talk informally about patients, share ideas, and all in all try to “do the right thing” for the patient. I will say that being rainy outside helps to keep us focused on the patient and not on the beach, too.
There was a book that was published several years ago entitled The American Way of Death that focused on the funeral industry and how it was changed by consumerism. Americans were shocked. New York Magazine offers an update on the process of going from vibrant alive person to the funeral home, found here, that is worth a read. In this sad tale, the author follows his mother’s journey through the health care system. It is a tale of progressive disability (the mother), a well intentioned but naive belief in the rightness of the advice given to them (the family), and either ignorance or profiteering (the doctors). Worth the read.
From a piece by Ken Murray entitled “How Doctors Die”
To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.
From my friend Josh Freeman’s post “How People Die and How Should We”
I have cared for many people who were dying but whose families wanted more done. People who already had advanced dementia and whose physical bodies falling apart. People whose heart and kidneys and lungs were failing, who couldn’t swallow and might choke on even a small amount of food, but whose families believed that if we didn’t do a surgical procedure to poke a hole directly into their stomach we would be starving them; who thought that if we didn’t plan to do cardiac resuscitation or given antibiotics for a possible pneumonia, that we would be killing them. Sometimes I am able to point out that death happens to everyone, and that having your heart just stop, or having pneumonia, or not being fed, are relatively easy, painless, and natural ways to die. Sometimes I am believed and sometimes not.
I made a home visit to a patient last week. She is over 90 years old and though bed bound is as sharp as a tack. I showed up at her apartment armed with a print-out of her health record and an agenda. I had noticed in her health records that we have no “Advanced Directives” in our file. This is important because she has outlived her husband and her children and has no one to make difficult decisions for her, should she become incapacitated. I showed up and apparently she was double booked, as a member of the clergy was there as well (I could tell from the Roman collar, which served the same purpose as my stethoscope). He was going to excuse himself but I asked him to stay. I went the expected routines of my visit (as I’m sure the minister did when he arrived). I then took a deep breath and said “I see from your medical record that we have not spoken about what should happen when your heart stops beating.” She went to reach for the burial information. I said:
“No, I mean in between the time your heart stops and the funeral happens. You see, we have to do everything unless you say not to do so in advance. The chances of us restarting your heart is very small (it’s over 90 years old, you know) so my advice is to let nature take its course. This fellow here (motioning to the minister) is the man to talk about what happens between now and then.”
We all had a nice, if brief, discussion and in the end she elected to sign a paper documenting her wishes.
To me, one of the great lessons of the Easter story is how it came to be when it is. It is a story of people fighting to get their ideas across, for no other reason than because they are convinced they are correct and the salvation of humanity was in the balance. I agree with Josh that stories of physicians fighting to do things to people because “they can’t come up with a reason not to” are representative of medicine (and by extension, humanity) at its worse. We as physicians may not know what the right answer is, but we can surely enlist the help of the patient, the family, and others such as the patient’s minister to get as close to right as we can.
I was sent an article in the lay press which was followed by the scientific article referenced within the lay article for the “Beyond the Medical Headlines” weekly column that I do for our health system. The article in the lay press had an intriguing title involving “Zombie cells.” The scientific article was a little more subdued (Clearance of p16[Ink4a]-positive senescent cells delays aging associated disorders) and can be found in the journal Nature. The zombie fixated lay writer started with a fairly circumspect quote from on of the investigators:
“By attacking these cells and what they produce, one day we may be able to break the link between aging mechanisms and predisposition to diseases like heart disease, stroke, cancers and dementia,”
but finished it off with a quote that was a little over the top:
“There is potential for a fundamental change in the way we provide treatment for chronic diseases in older people.”
I would be the first to agree that there is potential for fundamental change in healthcare…I have trouble believing that rat doctors will lead the charge in the immediate future
The study was done with mice that are genetically altered to become old quicker than normal rats (who get old pretty quick anyway). They then used a proposed marker for cell aging (p16[Ink4a) and developed a method of removing these “old” cells. The mice were compared to untreated mice at 10 months. The treated mice looked much more ready for a close-up and ran faster on the treadmill than the untreated mice. It is a long way from 10 month old rats to 70 year old people who have smoked for 60 of those years, spent a total of 30 years in the sun, have a sedentary lifestyle and are double the weight that they should be.
If you are interested in how the rats live prior to their untimely demise in the name of research, here is a good article. Here is someone else’s take on translating rat medicine to humans. The bottom line:
The current approach to studying arrhythmia and many other diseases goes back to a three-step protocol worked out by the German scientist Rudolf Virchow, Efimov says. The first step is to identify the clinical signs and symptoms of the disease; the second is to recreate those symptoms and identify a therapy in an animal model; and the third evaluate the safety and efficacy of the therapy in clinical trials. “The problem is that at least in the cardiac arrhythmia field, this paradigm has had very few successes,” Efimov says. “It has resulted in the discovery of almost no successful drugs. Clinical trial after clinical trial has ended in failure.” Mice are the most popular animal model in physiology, but the mouse is not a very good model for cardiac physiology. “A mouse’s heart beats about 600 times per minute, so you can imagine it is a little different from humans, whose hearts beat on average 72 times per minute,” Efimov says. “You can mutate in mice the gene thought to cause heart failure in humans and you don’t get the same disease, because the mouse is so different,” Efimov says. “So, unfortunately, even with the help of transgenic mice, very few results made it from the animal model to the clinic.” The answer, Efimov says, is to insert an additional step in the three-step research protocol. After a therapy has been tested in an animal model, it should be tested in human hearts before moving to clinical trials. “Since we’ve begun to work with human hearts,” he says, “we’re finally starting to catch up with animal physiology.”
Per istam sanctan unctionem et suam piissimam misericordiam, indulgeat tibi Dominus quidquid per (visum, audtiotum, odorátum, gustum et locutiónem, tactum, gressum deliquisti.) Catholic Catechism prior to 1972
SHOCK ADVISED Voice prompt from Automatic External Defibrillator prior to shock being delivered
A miracle happened 50 years ago. In 1960 an article was published that documented 14 people who survived what up until then was a fatal heart stoppage. The survival was facilitated by closed chest massage, the act of pressing firmly and rhythmically on the chest until a heart rate returned. In 1962, the delivery of electricity in the form of direct-current, monophasic current (defibrillation) was found to result in increased survival. Prior to that, people whose heart stopped were just dead.
Unfortunately, not all people who need chest compressions and defibrillation are created equal. If the patient’s heart is stopped because of an episode of ventricular fibrillation and the defibrillator happens to be right next to the patient, the patient has a 1 in 4 chance of walking out of the hospital as if nothing happened. If the heart has stopped for any other reason, the chances are less than 1 in 10. For every minute it takes to get the defibrillator to the patient to administer the shock, the absolute chance of survival goes down by 7%. If the first check of the cardiac rhythm reveals a type of rhythm called pulseless electrical activity (PEA), the chance of leaving the hospital through the door (as opposed to the morgue) is less than 1 in 100 and the chance of not having a significant loss of neurologic function even if you leave through the door is less than 1 in 1000. If you have an underlying disease such as metastatic cancer or renal failure, the chance of surviving an episode of cardiopulmonary arrest is often less than 1 in 100 regardless of what the initial rhythm was. For some, a death due to arrythmia might be preferable to death due to an underlying disease such as dementia or painful metastasis. Allowing patients to determine what response they would prefer should cardio-pulmonary arrest occur is made more dificult because people really overestimate their possibility of survival should they go into cardiopulmonary arrest by a factor of 2-3 times.
So why do we continue promote this technology (CPR and ACLS) that only works for a very select group of people in very specific circumstances as a panacea for anyone who is dying? From a website describing traditional (prior to 1972) Roman Catholic beliefs, the “last rights” or Extreme Unction
is the anointing given to those who are gravely bodily ill, especially those in danger of death from bodily illness or from violence already done to the body. The effects of the Sacrament are the strengthening and comfort of the soul of the anointed one, the remission of sins and some of their temporal punishments, and the possible restoration of bodily health.
This rite was offered to all Catholics. It was considered important to receive this sacrament prior to death if one wished to ascend quickly into heaven. You will note, importantly, it was not a request specifically for divine intervention to restore bodily health (the recipient was expected to die). It was a request for forgiveness, comfort and solace. It offered solace not only to the stricken, but to the family members who shared the sick house as well in part because they were expected to participate in the service.
The scene is familiar from television shows such as ER and Grey’s Anatomy. Paramedics rush a patient into the emergency room or a nurse in an intensive care unit shouts ―code blue. Crash carts are deployed and a doctor orders a procedure ―stat, such as ―start a central line. The doctor might intubate or ―bag the patient or, more dramatically, ―shocks them by applying the paddles to the chest immediately after someone yells ―clear. A nurse yells something about ―V-Fib so the doctor orders Lidocaine and hollers, ―charge to 300! Clear! and shocks the patient again. Sometimes the patient‘s heart starts again, and because of the miracle of medical technology the patients lives, although for how much longer we rarely find out. Sometimes the efforts of the medical staff are in vain, and the doctor ―calls it. Occasionally, the doctor does not quit until the futility of the exercise is apparent, sometimes pointed out by a nurse or another doctor. ―Time of death, 2:25. A nurse or technician turns off the monitors, and the high-pitched continuous tone, which had previously been a series of rapid beeps, goes silent. The doctors and nurses leave the room and the last camera shot is the corpse on a gurney, with tubes penetrating the body and the floor littered with medical waste.
This is the metaphorical fist towards the heavens that I believe is today’s equivalent to “last rites.” The above passage was taken from a dissertation written last year that looked at the attitudes towards death of physicians and patients in a large, north-eastern hospital. As described in John Fox’s dissertation, physicians see death as the enemy and feel uncomfortable discussing short-term prognoses with patients. He details situations where patients are appropriately aware that they are dying only to have their sanity questioned by their physicians. In addition, the general public has little concept of the inner workings of death in the hospital or even of the limitations of technology; thus they are hesitant to not summon the health care gods when it appears they might benefit. In short, “I’m a Catholic, please call a priest” has morphed into “I’m dying, call 911.”
Dr Fox (I presume he got his doctorate) points out that dying is a part of living and suggests we need to continue to emphasize palliation and spirituality when caring for the dying. I hope we as a profession can change our focus from curing to caring for patients who are clearly making this transition. Offering someone who will not benefit a procedure such as ACLS because we are uncomfortable having a conversation is not right. Spending billions of dollars on end-of-life procedures known to be worthless to fight an enemy (death) who is clearly going to win is not right either. I hope that as defibrillation and CPR approach 60, we are finally able to put them in their rightful place in our armamentarium. As I discussed here, having such discussions is important. Maybe one day we’ll get paid for them.
Addendum – The New England Journal of Medicine has published an editorial on this subject here which is worth a read
In a post from August I mentioned overhearing the statement “We don’t know what form health care reform will take” and feeling that I had some idea. I pointed out that rule making is very important now that the law is passed and I was encouraged by the calliber of the appointments at CMS. From an article in the New York Times
The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.
Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.
While the new law does not mention advance care planning, the Obama administration has been able to achieve its policy goal through the regulation-writing process, a strategy that could become more prevalent in the next two years as the president deals with a strengthened Republican opposition in Congress.
In this case, the administration said research had shown the value of end-of-life planning.
“Advance care planning improves end-of-life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives,” the administration said in the preamble to the Medicare regulation, quoting research published this year in the British Medical Journal.
Perhaps one day when I have an hour long discussion with a patient regarding end-of-life care I’ll actually get paid for it.
I don’t consider myself to be a Baby Boomer. The “Baby Boom generation” in America refers to those folks born from 1946 – 1964, mostly to parents who experienced World War II. They changed everything they touched (and continue to do so today). According to Wikipedia (the source of all knowledge regarding culture) Schuman and Scott reported that now there are 2 different Baby Boomer groups. The first cohort is currently over 55 (born from 1945- 1955). When polled in 1987, they listed the following as important:
- Memorable events: the Cuban Missile Crisis, assassinations of JFK, Robert Kennedy, and Martin Luther King, Jr., political unrest, walk on the moon, risk of the draft into the Vietnam War, anti-war protests, social experimentation, sexual freedom, drug experimentation, civil rights movement, environmental movement, women’s movement, protests and riots,Woodstock, mainstream rock from the Beatles to Jimi Hendrix
- Key characteristics: experimental, individualism, free spirited, social cause oriented
- Key members: Former UK Prime Minister Tony Blair, U.S. President George W. Bush
The second cohort is the one that I belong to (born between 1956 and 1964). We listed our beliefs as follows:
- Memorable events: Watergate, Nixon resigns, the Cold War, lowered drinking age in many states 1970-1976 (followed by raising), the oil embargo, raging inflation, gasoline shortages, Jimmy Carter’s imposition of registration for the draft, punk or new wave from Deborah Harry and techno pop to Annie Lennox and MTV
- Key characteristics: less optimistic, distrust of government, general cynicism
- Key members: Douglas Coupland who initially was called a Gen Xer but now rejects it and Barack Obama who many national observers have recently called a post-Boomer, and more specifically part of Generation Jones
Part of our cynicism I suspect was being the tail end of a group of folks that constituted 40% of the population in 1964 when I was 4. What we found was that when they wanted to start drinking at 18, the country started drinking at 18 (moved back to 21 as their children approached 18). When they began approaching the age where sexual activity is typically reduced, Viagra (and now testosterone) were allowed to be advertised in public and “erectile dysfunction” became a cocktail party conversation starter. Protection of Medicare is suddenly now in vogue.
The oldest “Boomers” are now 65. Although they do not want to be considered old, I am convinced that despite the advances of modern medicine they will suffer the same reduction in reflexes, vision, and hearing that others do as they approach 70. Their livers and kidneys will begin to become just a little less efficient. It may be that just as we found a pill to “combat” erectile dysfunction, we will find one to delay these certainties as well. I suspect not.
So, don’t be surprised if it is suddenly trendy not to drive but to take public transportation. Train travel for long distances (or at least more comfortable airplane seats) will be discovered. Molecular medicine specialists will tailor dosages based on certain parameters that look a lot like normal aging (no geriatricians for this cohort). Musculoskeletal problems such as osteoporosis will be treated with gym memberships paid for out of health care costs. Smart housing will remind you to take your medicine. If you are studying the health care system or considering a career in medicine, pay attention to the problems of old people. Just don’t call them old.
As a teaching practice, we take care of patients from other local care facilities who suffer from mental illness and have an acute medical illness. As I am on the hospital service for these two weeks, I am spending time with these patients as well as learning the habits of the physicians employed by these facilities. We have a patient with end stage dementia who has been bounced back and forth from our facility to their facility, a situation for which I feel bad. This patient has had a decline over the past 2 months, changing from a walking (though non-communicative) demented person to one who is now confined to the bed and no longer eating. While we have been trying to get the health care facility to acknowledge that the end of this person’s life is approaching, the facility continues to send her back for a “work-up” to see if we can make her “better.” It is my belief that the patient is the biggest loser in this case.
As my Dad pointed out on this week’s (not often enough) phone call, we are all going to die of something. Dementia is not often a cause of death in our statistics but is often a contributor. People who are demented forget to eat, forget to drink, forget how to clothe themselves, forget how to walk, and once bed bound are likely to die of pneumonia. Despite this fairly predictable course, according to the Alzheimer’s Foundation in 2005 only 11% of people who were in a nursing home for dementia were refered to hospice and non-palliative care was quite common in residents with dementia. This included tube feeding, laboratory tests, restraints, and intravenous therapy.
The Alzheimer’s Association identified the following as true regarding people living with dementia admitted into long-term care facilities:
1. Aggressive medical treatment for residents with advanced dementia is often inappropriate for medical reasons, has a low rate of success, and can have negative outcomes that hasten functional decline and death.
2. Quality palliative care is an effective alternative to aggressive treatment and is closely related to staffing and training in nursing homes.
3. While there is an expanding body of knowledge about the risk and benefits of treatments for persons with advanced dementia, there are significant barriers to translating that knowledge to practice.
#3 is especially true in the case of our patient.
I grew up in Baton Rouge, Louisiana in the 1960s. My neighbors on all sides were my age, Catholic (as was I), and attended the same church/school/parish activities. My mother’s brother lived down the street with his large Catholic family. If someone missed Mass, we all knew before the final hymn who missed, why they missed, and whether it was contagious. I was reminded of this because of the family activities that the holidays bring as well as the Christmas present that I was given by my family. The present was a copy of American Catholic: The Saints and Sinners who Built America’s Most Powerful Church, a book about the rise of the Church from the mid-1800s to today. Much of the book is focused on the mid-20th century, and it brought home just how unusual our home/parish/neighborhood was. In other parts of America by 1960 the suburban exodus enforced mingling of people from varied backgrounds and religious beliefs (albeit overwhelmingly Caucasian) making the church less relevant for Catholics. But for us, growing up was a Catholic, Cajun experience where Father Funke was involved in our daily lives.
As a member of the ethics committee for the hospital and one of the faculty members who offers ethics instruction to medical students, the importance of autonomy has been drilled into me. If the patient has expressed a wish on how they would want things to go given a specific set of circumstances, that is what should happen. Visiting with my family, I think of how unusual it is for the exact circumstance to have been thought of, discussed, and decided prior to it happening. As a physician who tries to get families to understand this, I know how often the system is found to be lacking. As the designated surrogate, this worries me as well. I often think that there must be a different way to make such decisions. I think back to my upbringing and wonder if the concept of utilizing complex relationship to assist in such decision making might help. The Catholic bishops have issued a set of directives regarding medical ethics for Catholic health care providers and institutions. In it, they identify the individual’s obligation (use ordinary or proportionate means of preserving his or her life) and when the individual may opt out (a person may forgo extraordinary or disproportionate means of preserving life). Knowing someone is Catholic, then, could in theory help me as physician to direct therapy.
Or not. Let’s take artificial nutrition as an example. The use of artificial nutrition would seem fairly straightforward. The bishops state that “There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.” Unfortunately, the benefits often aren’t that clear. We do know it prolongs life in persistent vegetative state and short gut syndrome. We don’t think it prolongs life in people with advanced cancer or Alzheimer’s disease (but don’t know for sure). We think that people who elect not to have such intervention and subsequently die of their disease do not seem to suffer any more than if they had elected to receive such therapy.
So when does the benefit outweigh the burden? Is it only when death is imminent, as some bishops state? Is it when after a massive stroke the patient is unable to function and will be a burden to caregivers? Is it after a period of time, when it becomes apparent that the burden has become intolerable?
How we die of our terminal illness almost always reflects more than just biological destiny. When I have a patient who is a Jehovah’s Witness in the hospital, it is not unusual for the church to send a representative to sit at the bedside. While I hope they are present to provide comfort and solace, it is common knowledge that they are also there to prevent accidental administration of blood products as well as to prevent a decision on the part of the patient to accept blood products should they be offered. However, Father at the bedside is not how most of my patients (Catholic or otherwise) have their values enforced in my experience. In practice, I find that we tend to have an internalized set of values that we draw on in times of stress. Often, things are not black or white. Proportionalism is one descriptive theory for how we deal with actions that in themselves are neither right nor wrong but could lead to an wrong outcome (such as a premature death).
What does this mean for me as a physician? It means that there is no easy answer. I have to give the patient (and his or her surrogate) as much information as possible in such situations to allow them to weigh it against their internal (or external) value system and make the best decision. As a patient, it means I need to choose a surrogate who shares my “moral compass.” As a potential surrogate, I have to admit that I will use my knowledge of the person for whom I am asked to make decisions rather than parrot back what I thought I heard from their lips.