Author Archives: jpwmd

In the introduction to this blog on September 5, 2021, I stated that initial entries would be heavy on hospice experiences during my ten plus years as a hospice team physician.  I have now exhausted stories that I can tell without betraying confidences–some circumstances are so idiosyncratic that people involved (patients and families) might be identifiable.

So I am now going to concentrate on general healthcare issues, attempting to identify and explicate important issues for intelligent lay people that get little coverage in the popular press.

So this is likely my last entry on hospice matters.

When I told new acquaintances what I did for a living while I worked in hospice, most people observed that the work must have been very difficult.  Generally, they were referring to the emotional challenge of caring for terminal patients.  

In fact, I found the hospice work very fulfilling.  I have had a varied background in medicine, including medical education, hospital administration, and a bit of research—all in the context of the practice of primary care.  But none of it has been more satisfying than my hospice work.  To be sure, there have been more than a few tragic moments, but, with my mutually supportive team of professionals, and, I guess,  a certain amount of professional distance, I have successfully navigated the emotional minefield.  And the good my team and I have done for terminal patients and their families far outweighs the emotional burden.  Taking away pain for the last two or three months of a patient’s life, for instance, has provided me with a powerful, palpable sense of accomplishment that was sometimes lacking in my other professional experiences.  

My hospice work was always interesting, even in “routine” cases—after all, every situation featured a new cast.  Of course there was a lot of sadness, but often a measure of joy.  I saw families coalesce around the care of a loved one and actually celebrate a life well lived and well loved.  As I reflect on my hospice experience, however, the overriding descriptor is profound.  I, and my hospice colleagues, were right in the middle of momentous events for patients and families, and were privileged to provide comfort care, while helping to guide them through the most difficult decisions in life.  

I think of the 32 year old  mother of three young children with a fatal pulmonary disease.  We were able to make her comfortable while maintaining lucidity, and she wanted to remain at home with her children for the duration of her illness. But she did not want to die in their presence.  We were fortunate to time it well—we got her to our short term care hospital facility the day before she died.

Or the World War II vet who fought in France and came home with a bottle of red wine.  He had lung cancer with widespread metastases.  With judicious doses of narcotics, he looked much better in person than on paper.  He was intelligent, understood his prognosis and accepted it, but had one very big regret.  He had been saving the Bordeaux for his sixtieth wedding anniversary celebration two months hence, but he knew that he could not partake.  Due to the risk of over sedation from the mix of alcohol and narcotics, he had been admonished to refrain from drinking.  When he told me this, I simply stared at him.  He said “Maybe I could…”, “I guess it couldn’t…”, “Maybe I will….”  When I left his apartment, I said “To your health.”  He did not wait for two months.  Good thing—he died about three weeks after I saw him.

Or the 55-year-old lifelong passionate Cubs fan with amyotrophic lateral sclerosis (Lou Gehrig Disease).  She had battled the disease for three years and was now completely paralyzed but for some marginally functioning respiratory muscles.  She had clearly stated she did not want to be put on a respirator, and, with the help of oxygen administered through a nasal cannula, she struggled through the summer of 2016, a Cubs cap atop her head.  She somehow made it through the world series win, then died a few weeks later.  This could have been a treacly Hollywood script, but it is true.

Or the pair of married 90-year-olds who had both been on kidney machines (hemodialysis) for years.  They were exhausted, overwhelmed, and depressed.  When we explained that discontinuation of dialysis was an option, and that kidney failure was very unlikely to cause an uncomfortable death, they both perked up and decided to discontinue treatment.  Their family members would have liked to have them persevere, but they honored their parents’ decision.  The wife died within a week, and the husband, somewhat discomfited by his lingering life, died three weeks later.

Or the 72-year-old man with terminal lung cancer.  Sam’s wife had left him 15 years before, declaring that she was gay and was moving in with her new partner.  The couple had collaborated in the raising of their daughter.  When Sam became unable to care for himself, his former wife, and her partner, moved in and tended to him until his death.

Or the undocumented Mexican immigrant with widespread stomach cancer.   59-years-old, Estaban understood his prognosis, but once we got his pain under control, he became obsessed with the idea of returning home.  He had no money, but my hospice company has a foundation, funded by donations from grateful family members of terminal patients for whom we cared.  We financed his trip home, and, not knowing what kind of medical care he would get in rural Mexico, we loaded him down with cartons of morphine.  I often wonder how the border crossing went.

Or another World War II vet with heart failure. 95 years old, John fought in France and somehow came home in one piece, the proud possessor of a purple heart.  He married and started a successful car dealership in Chicago’s northern suburbs, and this enterprise financed the college education of his four children.  John’s heart had betrayed him—it was pumping at about 10 percent efficiency, and it was clear he was not long for this world.  HIs elderly wife, exhausted by the care she had lovingly provided to John, had reluctantly placed him in an assisted living facility.  

Like many hospices, my company employs veterans’ liaisons.  Among their duties is recognition of the service of our veterans, and Captain Warner, a retired army ranger, carried out this mission with a passion.  On the day of John’s ceremony, the hospice team, family, facility personnel, and other residents gathered in a common room.  John was wheeled in, listing to his left, army cap askew.  He seemed to be only intermittently conscious.  The captain played a recording of the national anthem, read the certificate of appreciation, and presented an American flag to John.  He then rose to attention and snapped off a smart salute.  John opened his eyes and, with a supreme effort, raised his tremulous right hand to his cap.  It was an imperfect salute, but a salute it unmistakably was.

When cholesterol lowering drugs were being investigated, there was no question that they lowered cholesterol levels in the blood.  But the cholesterol level is a mere number, and does not address the crucial question of whether patients actually benefit from these drugs.* This is the clinically relevant question, a concept that sometimes seems to get lost in the approval process of new drugs.

Enter Aducanumad (brand name Aduhelm).  The U.S. Food and Drug Administration (FDA) recently granted approval of this drug for patients with mild symptoms of Alzheimer Disease, based in no small part on its unquestioned ability to attack the amyloid plaques found in the brains of Alzheimer’s patients.  These collections of protein have been the subject of research for years in the neurological research community, and the idea that removing them to treat Alzheimer’s has been the subject of extensive investigation.

Well, does Aducanumad, in addition to obliterating the plaques, actually help patients?  Do the clinically relevant measures of cognitive decline improve, or at least progress more slowly?

Two large, well designed studies addressed this question.  One showed a miniscule advantage in the scores of Alzheimer’s patients on neurocognitive testing; the other found no difference between the patients who got the drug (the intervention group) and those who got placebo (the control group).  Neurologists have mostly concluded that we still do not know if Aducanumad is effective in treating Alzheimer Disease.

We do know it is expensive ($56,000 a year!), and we know that it is associated with brain swelling (reversible) and sometimes minor cerebral bleeding.  We also know that FDA approval was highly controversial.  The decision to approve went against the FDA’s advisory committee’s recommendation and occasioned the resignation of three scientists on the committee who protested the action.  

The clinically relevant question of whether Aducanumad is effective in treating Alzheimer Disease remains unanswered.  The question of whether Biogen, the manufacturer, has benefited financially is not in question.

*For patients with established cardiovascular disease, the evidence that statins (the most commonly prescribed pharmaceutical to lower cholesterol) reduce morbidity and mortality is solid.  This is secondary prevention.  The question whether primary prevention (giving a drug to people who have not had any clinical symptoms of heart disease) is complex and subject to some degree of controversy.

POSTSCRIPT: As always, I urge you to pass along the address of this blog: medicalbeat.net  To be notified of new posts, simply scroll down to the bottom of the home page and enter your email address.

Hospice doctors generally do not actively target root causes of disease in treating patients—we treat symptoms.  The patients’ drugs are usually max-ed out anyway and further intervention in the underlying cause of patients’ problems is futile.  We usually maintain appropriate medications the patient was taking when admitted to hospice, and tinker with them minimally.  

But sometimes an intervention in the patient’s drug regime is so obvious, and easy, that we do intervene.  For example, a cardiac patient may be running a blood pressure that is too high for the optimal treatment of heart failure.  A simple increase in the dose of an antihypertensive medication may lower the pressure, improve cardiac function, and make the patient more comfortable.  Or adding a low dose steroid to a patient with severe emphysema can do wonders for the comfort of a patient.

Another area ripe for active intervention springs from complicated, extensive drug regimens.  For me It was almost impossible to resist trying to rationalize startlingly burdensome amounts of prescriptions.  Patients routinely came under our care with 20 medications, some of which were actually harmful.  This partially reflects the pharmaceutical industry’s other worldly marketing.  Patients and families often resist stopping a cholesterol lowering drug, for instance, even though the patient is malnourished and weighs less than 90 pounds.  The drug companies have persuaded them that they need to take these medications right to the end of life.  Convincing families and patients of the dangers, and futility, of these drugs can be very difficult, however, as the marketing leaves an imprint that can be impervious to reason.

Paring down the medication burden is most rewarding when patients are on a plethora of psychoactive medications.  It was not unusual, for instance, to encounter patients new to hospice on multiple drugs that can impair consciousness.  The genesis of such  insupportable regimens springs from  the various sites of care that a patient has encountered before coming to hospice: nursing homes, assisted living facilities, emergency rooms, urgent care centers, and hospitals.  Each setting finds a doctor responding to symptoms such as agitation, anxiety, psychosis, and depression by layering on more medications without the careful review of all medications that a good primary care doctor does.

Jean Paul was an 83 year old male with mild to moderate dementia, but, except for some extreme episodes of agitation, which sometimes threatened violence, his wife was able to care for him at home.  A conscientious caretaker, she administered all of his medications as directed.  These had accumulated from episodes of care in multiple settings and, for each of these encounters, new psychoactive drugs, most of them with sedating side effects, were often prescribed without apparent attention to the patient’s entire drug regimen.  

Over the course of a few months, Jean Paul’s wife began to notice a decline in his alertness, and this soon progressed to stuporousness.  It seemed his dementia was precipitously worsening and that it was time for hospice.

In her initial evaluation, his hospice nurse found that Jean Paul was on two antipsychotics, two anti-anxiety pills and two sleeping pills–conscientiously administered by his wife as scheduled.  We slowly tapered all of these drugs, and the patient’s alertness improved weekly.  Finally, after three months, the patient reverted to his level of mental acuity from about four months prior.  Caring for him was still a challenge, but he was no longer appropriate for hospice care.  The hospice team helped to line up agencies to assist his wife with his care, and we discharged him with the promise that  he could always be readmitted to hospice care if clinical deterioration warranted it.

Senator Rand Paul is a fierce opponent of mandatory face masking to prevent the spread of COVID-19. So is Representative Marjorie Taylor Greene. Paul says “Most of the masks you get over the counter don’t work. They don’t prevent infection.” Greene says both vaccines and masks do not reduce the spread of the virus.

In light of these statements, YouTube suspended Paul’s account and Twitter did the same for Greene.

Was this an overreaction? In researching reliable answers to this question, I was overwhelmed by a staggering amount of endorsements of masking by the scientific community. Most of these were based on compelling observational studies that include:

— In a high exposure event, two hairdressers, who were symptomatic and later proven to have COVID, interacted with 139 clients over a period of
at least 15 minutes. The stylists and clients all wore masks, and none of the 67 clients who were able to be tracked developed infection.

— In a study from Thailand, investigators followed 1,000 persons who were
at risk for infection from a high exposure event. Those who wore masks
experienced a 70% reduced risk of acquiring infection compared to
their maskless colleagues.

— In an outbreak of COVID infections on the USS Roosevelt, those wearing face coverings had a 70% reduced risk of getting infected
compared to those who used no facial coverings.

And it goes on and on. Anti-maskers, however, have pointed out, accurately, that these observational studies lacked the power of the gold standard in clinical research–the randomized controlled trial (RCT)*. This is no longer true.

In a recently published study from Stanford University, researchers randomized 350,000 (!) citizens of Bangladesh to a group that used masking without any special urging and a group that received frequent reminders to wear masks. The intervention group had triple the amount of mask usage compared to the other group (42% to 13%), and had a 9% reduction in symptomatic cases (those wearing cloth masks, rather than surgical masks, had a 5% reduction).

This may seem like a modest advantage, but researchers point out that, because they only looked at symptomatic cases (rather than those who were infected but had no symptoms), the reduction of infections in the group receiving reminders to wear masks was significantly understated.

But even using this modest figure, universal masking in the United States could have prevented almost 10% of the COVID infections (currently at about 46,400,000) and thousands of COVID related deaths. Senator Paul is a physician–an ophthalmologist. When it comes to wearing face masks to prevent infection, he seems to be quite myopic.

*In an RCT, a large number of people (the larger the better) agree to be randomly assigned to one of two groups: the group that is receiving an intervention in question and the control group. The latter group receives “usual care,” that is, nothing is added to whatever they were doing prior to the study.

POSTSCRIPT: Face masks have a role in preventing COVID infections, but they pale in comparison to vaccines for prevention of the spread of COVID. Regardless of how you view masking, GET VACCINATED!

At the intersection of healthcare and politics, reason and responsibility are in short supply.  With little or no substitute plan, the House of Representatives voted to repeal Obamacare 67 times.  Medicare Part D (a prescription drug benefit for Medicare enrollees), a necessary but expensive program, was created without budgeting money for it.  And a good policy that promised to enhance end of life planning fell victim to raw politics during the 2008 presidential campaign.  First, some background.

I believe that, as a society, we have learned to take into account the quality  of life much more than even a generation ago.  When I was a resident physician in the late 70’s, we would routinely provide hospital care for patients that, in my mind, except for the provision of comfort measures, should have been left alone.  A typical scenario involved a hopelessly demented, nutritionally compromised patient from a nursing home with a high fever, hypotension (low blood pressure), and an obvious infection, usually originating from the urine or lungs.  More often than not, we were able to “successfully” treat these patients with intravenous fluids and antibiotics, and send the patient back to a nursing home. These were pyrrhic victories, for the same cycle was often repeated a few months later.  

This type of care still occurs, but hospice has provided an excellent alternative to aggressive, and often inappropriate, care.  People are realizing they can make choices in medical matters, and primary care doctors are increasingly urging patients to think about the care they may desire at the end of life.  This type of counseling has not occurred as much as it should—discussions on mortality with a physician take a sensitive approach and a lot of time.  Doctors are frequently scheduled to see a  patient every fifteen minutes (in corporatized medicine, it is often less), and they must deal with a variety of contemporaneous problems like hypertension, diabetes, heart disease.  Taking the time to talk about dying during these routine visits is simply not realistic.  

In the summer of 2008, Medicare tried to create a new billing category so as to explicitly reimburse physicians, who could then set aside the time needed to discuss mortal decisions with patients and their families.  The idea was to give doctors the opportunity to lay out choices that patients face at the end of life.  This was not designed as advocacy for, say, executing a DNR (Do Not Resuscitate) order or even forgoing treatment in a hopeless medical situation.  Rather, it provided time to explain options in treatment and consequences thereof,  This new billing category was a terrific idea, especially as it could be helpful in averting the type of useless and inhumane treatment described above.  It incentivized doctors to do what the best of them were already doing in their routine care of the elderly.

However, the Republican vice-presidential candidate, Sarah Palin, decided that Medicare was creating “death panels” and that Democrats were out to kill the elderly in order to create an electorate better constituted for the Democratic Party.  So Medicare was forced to back off from implementing this rule.  Recently, Medicare did successfully institute the new billing policy, but I often wonder how many painful or otherwise uncomfortable deaths Palin caused with her mindless pandering.

In as recent post, I made a case for engaging hospice services. Here is an example of the reason that unfortunately I encountered several times.

Katherine’s situation illustrates how sloppy end of life decision making can be harmful, both from a humanitarian and fiscal point of view.  She was 92, and a long time denizen of a nursing home.  She had suffered many strokes, was non-communicative, and needed facility personnel to perform all personal care for her.  Her out-of-state daughter provided somewhat less than compulsive oversight of her care.  One evening, the patient was found on the floor next to her mattress (no bed–an intervention designed to minimize injury from a fall).  This happens frequently in nursing homes and usually does not result in significant injury.  “Going to ground” is a more appropriate conceptualization of the event. However, this unwitnessed “fall” caused the nursing home, by policy, to call 911.  Most nursing homes, spooked by the fear of legal liability, would have done the same.  The ambulance arrived, even as the nursing home tried to unsuccessfully notify the daughter.  This unaware woman was trundled off to the hospital where thousands of dollars worth of x-rays, blood tests, and cardiac tests were performed.  Nothing concrete showed up, and she was admitted to the hospital for observation.  

Isolated in her unfamiliar environment, she became agitated and psychotic, a common occurrence when the elderly are subjected to a change in scenery—even when they appear to be oblivious to external stimuli. As physical restraints are illegal in Illinois, Katherine was chemically “restrained.”  That is, she was given a combination of sedatives and anti-psychotics that calmed her—for awhile.  As the medications wore off, she continued to be combative, so the hospital doctor poured on more medications.  By morning, she was in a coma.  This of course prompted a head CT scan, which was negative for any acute pathology.  Her unresponsive state was clearly due to an overdose of drugs, which, as is often the case in the elderly, built up to dangerous levels due to the slower metabolism that attends aging.  In three days, she was finally arousable and was sent back to her nursing home.  No one had been able to contact her daughter.  The patient did not carry a DNR status, so, if she had suffered a cardio-pulmonary arrest, the hospital and the facility would have been legally obligated to attempt cardio-pulmonary resuscitation.  

Had the patient been on hospice, an entirely different scenario would have unfolded.  When the patient was found on the floor, the nursing home would have called the hospice caring for her, and a nurse would have been dispatched to evaluate the situation at any time day or night.  The nurse would have looked for signs of injury (bruises, an out-of-line limb, etc.) and any indication of pain.  The on-call hospice doctor would have been contacted for consultation if necessary and would have prescribed any necessary medications.  In the absence of any obvious fractures, no x-rays would have been performed.  Hospice would have contacted the patient’s health care power of attorney, and any decision regarding more aggressive care would have been discussed.  For instance, if it appeared that the patient had fractured her hip (an injury that can be detected fairly easily by clinical exam), hospitalization, with surgery, would have been contemplated, if that course seemed be best for the long term comfort of the patient.  Alternatively, simple treatment of any associated pain might be the best prescription.  

After her hospitalization, Katherine never recovered what little cognitive function she had, and she quit eating.  Her daughter was finally contacted and the patient was admitted to the care of my hospice.  Detailed discussions resulted in a DNR order, which inoculated the patient against inappropriately aggressive care.  The daughter directed hospice to admit her mother to a hospital under no circumstances, and stated that we should render comfort care only—no matter what malady might occur.  The patient died in a couple of weeks, and the patient’s dying process could have been much less expensive if she had been on hospice before her “fall.”  But far more importantly, had a primary care doctor been proactive in helping to make end of life decisions years before Katherine’s acute events, her death would have been much less painful, and far more dignified.

A great challenge in the care of demented patients under hospice care is the issue of prognosis.  Patients become eligible for hospice services when a referring physician and a hospice doctor agree that the patient will probably live no longer than six months. It is fairly easy to predict that end- stage cardiac, pulmonary, and cancer patients will die in the six month period that conforms to Medicare prognostic guidelines, but this is not the case with dementia.  I have had demented patients under my care for years, even though they are helpless and have no apparent cognitive function.  

Medicare requires that a physician (or a nurse practitioner under the supervision of a physician) “recertify,” with a personal visit, patients’ continued eligibility after six months on hospice, and every two months thereafter.  If there is no sign of deterioration (recent infection, development of bed sores, apparent worsening of pain and/or anxiety, diminishing appetite, and the like), we are supposed to “discharge” the patient from hospice care. This is true even though the patient would qualify for hospice care if he/she were being newly evaluated.  

This in-person recertification requirement came into effect a few years ago, and Medicare says it is a rule designed for quality care.  But if this were true, Medicare should require that patients newly admitted to hospice be seen by a hospice physician in a timely fashion.  This is not the case, and in fact no personal hospice physician visit is mandated until the six month milestone.  It seems obvious the recertification process is designed to save money.  

But just how costly is hospice?  In a previous post, I documented the ever increasing usage and expense to the government of hospice services (almost all hospice patients receive benefits at no charge).  This has caused some healthcare economists to decry these burgeoning expenditures.  But the case can be made that hospice is a money saver, and in fact a healthcare analytics data firm has done just that.  A 2019 study  found that patients who did not choose the hospice benefit incurred as much as $27,455 in additional healthcare costs, compared with patients who received hospice care in their last months of life.

What is going on?  With the wide availability of hospice services, families and patients are increasingly choosing to forgo aggressive medical care when the end of life is obviously near.  This has increased the national hospice bill considerably, but there is more than an equal decrease in overall expenditure for Medicare hospitalizations, including useless, and often painful, interventions.  

Hospice is a wildly popular program with satisfaction surveys that are off the charts, and it is a critically important service regardless of the cost.  But there is also a net savings to our healthcare system with hospice.  Apparently unable to see the overall savings, some Medicare analysts suffer from a “silo” mentality that obfuscates good decision making.  

Hospice services are still underutilized–oncology societies estimate that as many as 50 percent of terminal cancer patients who would benefit from hospice do not get enrolled in the program and/or get enrolled at a time near death, which deprives them of the full force of hospice services.  Rather than worrying about threats to Medicare’s bottom line, and making criteria for qualifying for hospice services more stringent, the bean counters should be looking for ways to increase hospice usage.

I recently posted the story of Raymond, a helpless demented patient whose loved ones, knowing that he had no quality of life, decided to discontinue oral feedings.

A variation on the theme of nutritional support involves feeding tubes.  For patients who cannot ingest calories orally, a feeding tube can be placed.  This is a surprisingly easy and a relatively safe procedure involving a small incision in the abdominal wall, a puncture of the stomach, and insertion of a flexible, hollow tube.  The tube is secured, and a liquid diet, in caloric amounts sufficient to sustain life, is dripped in.  This arrangement can sustain life indefinitely.  There is nothing like the original equipment, though, and the tube placement can get infected and/or the patient can suffer pneumonia from the feedings backing up and going into the lungs (i.e., aspiration pneumonia).

These feeding tubes often get placed during an acute illness from which there is legitimate reason to think recovery is possible.  The idea would be that the tube could be eventually discontinued and normal eating resumed.  Grace was a 83 year old female who had a moderate degree of dementia when she suffered a stroke that left her unable to swallow.  In the reasonable hope that she would recover from the stroke, a feeding tube was placed to support her until she was able to eat on her own.  Alas, the patient never recovered and her mental status worsened.  Cognitively oblivious, she was soon unable to do anything, including swallowing, so the tube feeding was her only source of nutrition.

Again the question of the quality of life arose, and again family members had differing views on withdrawal of nutritional support.  Also, for many caretakers, stopping tube feeding seems to be a more active intervention, and therefore more intimidating, than simply stopping oral feeding.  After much discussion, and consultation with a religious figure close to the family, the decision to discontinue tube feeding was made.  Grace lasted an unusually long time–three and a half weeks, every second of which was agonizing for the family.  Like most families, though, they were grateful when Grace’s suffering ended.

Some readers have expressed an interest in the history of the hospice movement.  Here is a skinny version, with some relevant statistics,

Hospice care was conceived by a visionary physician in England, Dame Cicely Saunders, in the late 1960’s.  She had witnessed too many unnecessarily difficult deaths and started the movement that retains her principles for end of life care to this day (a biography is available: “Cicely Saunders, The Founder of the Modern Hospice Movement” by Shirley du Boulay) .  The hospice movement made it to the United States in the late 1970’s, championed by the Dean of the Yale School of Nursing, Florence Wald, and Senator Robert Dole.  In 1979, 26 demonstration programs were established across the country, and, in 1986, Congress made the Medicare Hospice Benefit permanent.

Here are some stats, taken from the NHPCO internet site (National Hospice and Palliative Care Organization, released in 2019).  1.49 million Medicare beneficiaries were enrolled in hospice in 2017, up from 1.27 million in 2012.  Medicare spent  $18.99 billion in 2017 for hospice services, compared to $16.20 billion in 2012.

Of those who died while on Medicare in 2017, 48.2% received one or more days of hospice care.  This figure varied dramatically from state to state, with Utah having the highest percentage at 59.9% and Alaska coming in at the bottom with 22.5 %.  The overall percentages correlate with greater usage in blue states, although this is by no means a perfect association (New York’s percentage, for instance, was 30.6%).  I have no idea why this is the case.

Hospice advocates believe hospice services in general are underutilized.  They point to the fact that 40.5% of hospice utilizers receive the benefit for 14 days or less, a sign that the healthcare system is failing to make the hospice referrals in a timely fashion. 

Some gainsayers say Medicare expenditures, especially the growth, are way too high.  It is easy, however, to make the case that hospice intervention is extremely cost effective, a subject for a later post.

Like me, my wife finished her career in internal medicine as a hospice team physician.  Dealing with many loved ones of patients who were demented and no longer competent, we were struck by the frequency that decisions had to be made in a vacuum–people just seemed to avoid the topic of death and never got around to stating what they wanted in critical medical situations.  This stimulated us to have The Big Talk with our two adult children.  We had a frank discussion about mortality and the aggressiveness of medical care we would want in various medical scenarios, if we became unable to make our own decisions, i.e. demented.  Here is why such a conversation is important.

Dementia is a common reason for patients entering hospice care.  Cognitive and physical impairment in dementia ranges from forgetfulness to complete helplessness.  Patients qualify for hospice services at the end stages when speech and mobility are compromised and they require help in activities of daily living (ADL’s: dressing, feeding, bathing, toileting).  As I have told many families, unpredictability is the only predictable prognostic factor in dementia.  The journey to the end can be a matter of months, or years.  Patients often die quietly, although sedating drugs and/or pain medications are often necessary to ease the way.  Inanition is often a prominent issue, as patients, for obscure reasons, just stop eating.

If decisions on feeding are not the most common challenge for decision making families with demented loved ones, they are surely the most agonizing.  Raymond took the long track in his Alzheimer’s journey.  Diagnosed with the disease when he was 72, he was able to stay at home for about four years under the heroic care of his wife.  The couple had five grown children, one of whom devoted considerable time and energy to the care of her father.  When Raymond began to turn on the gas burners on the stove for no reason and to wander in the neighborhood unsupervised, the family made the difficult decision to put him in a nursing home, where the environment was secure with 24 hour monitoring.

He adjusted quite well to his institutionalized life—so well that, at times, the family wondered whether he might be able to return home.  This is not atypical for Alzheimer’s patients.  While the course of the disease over the long haul is inexorably downhill, there are peaks and valleys.  The good times, almost cruelly, fuel family’s hopes for recovery, which are dashed when the next inevitable downturn occurs.

At the age of 79, Raymond became bed bound, and he could then be cared for at home.  The family hired a 24 hour caregiver, and he was placed under hospice care.  He was helpless and non-communicative.  His face was impassive, and soon he seemed to recognize no one and to have no awareness of his environment.  His “activity” was confined to opening his mouth for food and swallowing it.  As this seemed more reflexive than volitional, his wife and daughter began to wonder about the wisdom of giving him the pureed diet he was ingesting.  Quality of life was the issue.

They asked me about stopping feeding, and I told them that such a decision was defensible and humane, assuring them that withdrawal of nutritional support would cause Raymond no discomfort.  The daughter was the power of attorney for healthcare and could therefore have legally made the decision unilaterally.  However, she was not about to make this mortal judgement without agreement among the siblings.  

The other four children lived out of town.  We were able to convene a meeting with all of them in attendance, with me present to answer questions and tell them what to expect with cessation of feeding.  There were a range of opinions regarding a course of action.  Some wondered whether cessation of feeding was tantamount to murder; others shared their sister’s and mother’s belief about the uselessness of continued feeding.  But all wondered what Dad would have wanted.  None of the children could recall ever having a conversation with their father about end of life issues.

Such intrafamilial divergence of opinion is common in these difficult circumstances.  “On the fence” out-of-towners, who have not personally witnessed the sorry state of their loved one for some time, often turn to advocating cessation of life support once they personally witness the pathetic condition of the patient.  In my experience, families generally come to a consensus, especially if the patient had explicitly made his or her wishes known in end of life situations.  In Raymond’s case, all finally agreed that their father would not have chosen to “live” as he was.  The children and the wife ultimately decided  to stop feedings, and he died peacefully about two weeks later.

Living wills are useful, but lack nuance.  In talking with our boys, I said that, in the event of an acute illness such as a stroke from which recovery was possible, I would want an all out medical effort–at least until multiple doctors agreed that, even if I lived, I would have no meaningful life.  Mindful of the many patients I treated like Raymond, however, I also said I did not want an existence in which I was oblivious to my environment.  If I could do nothing but ingest, I would want to be kept comfortable and I would want all nutrition to be withheld until the inevitable.