Older people are, like all people, a widely varied group.
Some are healthy and independent and can live on their own until very old age,
while others have diseases that make them infirm at chronologically much
younger ages. Some live with family members or have family members living with
them. Most of those are well cared for, but some are exploited or even abused.
Some elders live in assisted living facilities or nursing homes. A lot more of
them are women than men, a reflection of differences in life expectancy. And
most of them will, sooner or later, have an adverse event occur that leads them
to be hospitalized. Sometimes it is almost routine, getting admitted for a
complication of an existing condition such as chronic lung disease or heart
disease; sometimes it a surprise, as when a 90-year old who has lived alone and
been healthy falls and breaks her hip. The first time something happens, I find
myself often repeating to these people and their families, is always the first
time, whether at 20 or 90.
Whenever I am the attending physician on our inpatient
service, we have a number of such people admitted, but in the last two weeks
the number of people admitted who were what my residents call “little old
ladies” seemed especially high. They ranged in age from their late 60s to 104;
some lived in nursing homes, some with family, and some lived alone (including
the 104 year old!). Some were admitted to the hospital for the first time,
while others were “frequent fliers”; some had families hover around and others seemed
to be left alone even when their family lived in town. A lot of them had falls,
sometimes with broken bones (most commonly hip fractures, but others as well),
sometimes, fortunately without. Some had moderate to very severe dementia, from
Alzheimer’s or other causes, and may know only who they are (or not even that);
others are “sharp as a tack” – at least when we can fix the dehydration or
whatever else has brought them in.
One characteristic shared by many of these people is that
they are unlikely to be safe returning to their homes. If they have fallen,
they are likely to fall again. If they avoided a hip fracture this time, they
may not next time. We do tests to see if there is an “explanation” for why they
fell that might be treatable. Did they have a stroke? Should they be on blood
thinners that make another stroke less likely but make the possibility of a
bleed into their brain much higher if they do fall and hit their head? Heart
rhythm problems? Maybe a pacemaker. Low blood sugar? Are they taking too much
insulin? Maybe they “just” tripped: on the cat, on the rug, on the hem of their
pants (which might be because those pants are hanging low from the 40 lbs they
have lost since they were last seen a year ago -- really? I have been eating. I
never noticed I was losing weight!) But, while anyone can trip, if it happens
more than a couple of times, they are at risk of something bad. Sometimes it is
possible for a health worker or family member to the home and help get rid of
clutter, area rugs, and such, but sometimes that isn’t enough.
No one wants to go to a nursing home, especially compared to
some idealized vision of being better and functional at home. Few families want
to send their parents or grandparents to a nursing home, feeling that it is
abandonment, or undignified, or irresponsible. Occasionally, there are
complicating social issues, as nursing homes will take the Social Security
check that family members are living on or Medicaid will require the sale of
the house that family members are living in. And nursing homes are not a panacea;
some are better than others, and folks get sick enough to require admission
back to the hospital even from the best. But often they are a safer option,
even when the family is committed to care. A person may be hospitalized by the
family for a minor change that makes the Alzheimer’s victim even harder to care
for; the primary care doctors may have already discussed admission to a nursing
home, and, as one put it, “their voices said ‘no’, but their eyes and body
language said ‘yes’.”
Medicare will pay for a period of time in a “skilled nursing
facility” (SNF), where a person who was hospitalized but no longer needs to be
in an acute-care hospital can get time to recover, get physical therapy, get to
the point where they in fact, often with home health and a supportive family,
go home. It works for someone who just had surgery, or someone who broke a bone
and either had it surgically repaired or not. But to get this “benefit” the
person needs to spend 3 midnights in the acute care hospital. Whether they need
acute care or not. Indeed, if they don’t “meet Medicare criteria” for an
inpatient hospitalization, they are not even officially “admitted” but are in a
fantasy world of “observation status” where they are in the hospital, but are officially outpatients. And those
nights don’t count toward “qualifying” for a SNF. So if you (or your father, or
grandmother), “just” tripped and hurt themselves, and didn’t break a hip this time (sometimes they have already
had both hips repaired), and is “just” bruised, and may have a “little” disorientation but no new stroke, and a little difficulty caring for themselves,
and could really benefit from a month of skilled nursing, you better be able to
pay for it, because Medicare won’t because they didn’t have 3 nights of “qualifying”.
This is crazy. I am a huge fan of “Medicare for All” rather
than the nonsense patchwork of often-inadequate private insurance plans (and
people who are uninsured) that we currently have. But that Medicare for all –
and right now, for those who are on it – needs to have a rational payment and
benefit structure. I understand the financial challenges facing Medicare (and
the whole health insurance system – it is not a “Medicare” problem, it is a
medical care problem) and believe that we need to save money by spending it
rationally. This means, perhaps, not paying
for every drug that the FDA approves even when it is not better than an
existing, cheaper drug. This means not doing fantastically expensive
interventions on people whose quality and duration of life will be marginally
affected. It does mean placing people
in the settings in which they can get the most appropriate, cost-effective
care, whether at home with or without home health, in a skilled nursing
facility, in a long-term care facility or in an acute care hospital. It does not mean requiring that someone who
would benefit from a stay in an SNF first have to “qualify” by being in an
acute care hospital overnight.
My local paper recently had a big front-page article about
the fantastic new technology being employed at our hospital using GPS to map
the location on the heart where an abnormal rhythm is being generated, so that
it might be able to be fixed.
Congratulations to the cardiologists and engineers who have developed this, and
to the PR department that got it in the paper. It might be a big help for a few
people, and will almost certainly be very costly (and profitable for the
hospital). But as we develop all these expensive new technologies that might
help a few people a lot and might help a few more a little, it is insane if we
save money by not providing what we already know is the right thing in
prevention and intervention for the conditions that affect the many. Right now,
Medicare is trying to save money by identifying “fraud”; they do this (this is
absolutely true!) by contracting with bounty-hunter companies called “RAC”s to
discover when a patient has been “admitted” when their condition didn’t
technically qualify and they should have been on “observation” status. They should be saving money by not paying for
expensive high-tech procedures which offer little benefit.
A rational health care system, as we have discussed before,
means that people are getting the right care in the right setting; this is the
ostensible promise of health-care integrated systems. But, just as we will
never have enough primary care doctors doing prevention and early treatment as
long as we pay them a fraction of what we pay those doing heroic (and often
ineffective) intervention for far-advanced disease, we will not have a rational
health care system if we pay for huge high-ticket items but not for people to
be in the right setting for them to receive the care that they need.
Medicare can, and should take the lead. For seniors, it is
our national health program. Others will follow.
The New York Times editorial on September 9,
treatments ignored”, is a commentary on a report in the September
7 issue of the Centers for Disease Control and Prevention (CDC) publication Morbidity and Mortality Weekly Report (MMWR)
Americans with hypertension (high blood pressure) were not being adequately
treated. The Times notes that the
study “found that 67 million Americans
had high blood pressure and that 31 million of them were being treated with
medicines that reduced their blood pressure to a safe level. The remaining 36
million fell into three groups: people who were not aware of their
hypertension, people who were aware but were not taking medication, and those
who were aware and were treated with medication but still had hypertension.”
This is definitely
not a good thing; hypertension is a serious disease that can have devastating
results – most obviously in stroke, but also in increasing the risk of heart
attack and kidney failure. Also, as the article states, treatment is relatively
easy – that is to say, there are drugs that are available for effectively
keeping hypertension under control. In fact, so many people are receiving effective treatment that the
incidence of bad outcomes, such as stroke, has greatly decreased. The Times editorial, however, creates the
impression that much or most of the fault of for lack of treatment is the
result of ignorant, incompetent, uncareful (or uncaring) physicians; the
reason, they write, is “…mostly because
overburdened doctors did not give hypertension high priority.” This is a
highly dubious assumption.
The editorial goes
on to praise, specifically, the Kaiser Health System for doing a good job of
controlling its patients’ blood pressure, and thus reducing the rate of strokes
and heart attacks: “The organization created a hypertension registry to track patients and
the care they were getting; eased the burden on doctors by using pharmacists to
initiate drug therapy and medical assistants to monitor patients’ progress;
made it easy for patients to get free blood pressure checks; and showed doctors
how their record on controlling blood pressure compared with others in the
system.” This is great.
People should get
treated effectively for treatable diseases, and hypertension is certainly one.
There are, however, many reasons why they are not always treated, and this
problem includes patient as well as provider issues. Hypertension is, on the
whole, asymptomatic; it does not cause pain or weakness or even, usually,
headaches; thus the sobriquet “silent killer”. The treatments, in addition to
drugs, include things like “…weight loss,
increased physical activity, lower sodium and alcohol consumption, and stress
management,” which require significant effort and commitment on the part of
the patient, and are not easy to do.
important, the lessons of Kaiser are not easily translated into the rest of the
health system. Kaiser is a very atypical in that it is a vertically-integrated,
closed-panel health system. For starters, and it is a very important start, every
patient in their panel is insured (though Kaiser) and every patient sees a
Kaiser provider. Thus, they control both the coverage and direct care of this
population, and they have a large enough scale to do outreach programs to
encourage and support people in adopting and maintaining the behaviors listed
above. This is, however, not the case for most of the community. Many people are
not insured, and many others have insurance that does not cover drugs and other
treatments. A variety of factors, some provider related (such as not being able
to get an appointment) and others originating from patients’ own decisions (choosing
to go to ERs and urgent care centers, and indeed “doctor shopping”), they see
different providers. That the US has an uncoordinated health non-system is the
key problem, not that "their doctors
are asleep at the switch."
concludes: “The benefits of reducing high
blood pressure — not to mention the cost savings — are obvious. The wonder is
that the health care system has done such a bad job of delivering those
benefits.” To me the wonder is that we have tolerated not actually having a
health system for as long as we have, and that health policy continues to try
to address issues of quality of care while ignoring the elephants in the room:
that so many people have no coverage or poor coverage, and that reimbursement
overwhelmingly rewards intervening once problems have arisen rather than
preventing them. That a physician hired by a hospital to inject clot-busters
into the brain’s arteries to try to reverse a stroke that has already occurred
earns, literally, several times as much as (and works much less than) a primary
care physician who treats hypertension (and many other diseases). The
reimbursement system is completely inequitable and inappropriate, and the
health system is a sick hodge-podge of half measures.
First, we need a
health insurance system that covers everyone: Medicare for all. Then we need to
reward systems-based and outcomes-based care. Then maybe all of us can see
results like Kaiser's.
A recurring question for physicians and others in the health profession is what degree of health advocacy is expected or appropriate. For those of us in medical education, the question becomes how much of the training (and evaluation) of medical students and residents should be based on advocacy for their patients or populations. Sarah Dobson and colleagues provide a useful formulation of this question in a “Perspective” in the recent Academic Medicine, “Agency and activism: rethinking health advocacy in the medical profession”. They note that “Health advocacy appears in various forms in professional charters and standards”; however, as Canadians they focus on the CanMEDS document. This is “…a competency-based framework developed by the Royal College of Physicians and Surgeons of Canada that describes the core knowledge, skills, and abilities of specialist physicians,” that has 7 core roles including “health advocate”.
In the United States, the clearest expression of the role of advocate is in the American Medical Association’s (AMA) Declaration of Professional Responsibility: Medicine’s Contract with Humanity, which contains, as item #8, “Advocate for social, economic, educational, and political changes that ameliorate suffering and contribute to human well-being.” Overall, the Declaration is quite an impressive document, the contents of which would surprise many in both the medical and lay communities who think of the AMA as professional advocacy group with no social conscience; sadly, there might be as many unpleasantly as pleasantly surprised by the discovery. Advocacy for patients is generally considered an appropriate role for physicians by physicians, but advocacy for social, economic, educational and political change is far less widely accepted.
Dobson and colleagues propose a parsing of the concept of advocacy into two components. They call these “agency”, working on behalf of the interests of a specific patient, and “activism”, which is more directed toward changing social conditions that impact health, and whose effect is seen on populations more than individuals. This is helpful in clarifying different perspectives on the term “advocacy”. While the CanMEDS framework, for example, calls for physicians to “…responsibly use their expertise and influence to advance the health and well-being of individual patients, communities, and populations,” the authors observe that trainees “…have variously described it as charity or as going above and beyond regular duties.” They note that “...several studies have concluded that although physicians generally endorse the idea of advocacy, they rarely engage in it.” They summarize the difference between agency and activism by saying “…whereas agency is about working the system, engaging in activism is about changing the system.”
The article concludes that there is a distinction to be made between the role and responsibilities of the individual physician and that of the medical profession as a whole. “Physicians and other health professionals witness the effects of the socioeconomic determinants of health every day, made
visible to various degrees in every patient encounter, “ but they question “whether this authority translates into an obligation.”
There are, however, many physicians who do act as social activists, and we need more of them. The source will be medical students who then become residents. Luckily, there seem to be no shortage of entering medical students with this commitment. They demonstrate it by community volunteer work, creating and working in free clinics, volunteering their time to work in schools, and pursuing training in public health, public policy, and community involvement. Sadly, however, along with empathy, which has been shown to dramatically drop as medical students enter their clinical training (Hojat, et al., and this blog, “Are we training physicians to be empathic? Apparently not.”, September 12, 2009), so does volunteerism and commitment to social change.
In the US, despite the AMA Declaration, there are no requirements for teaching advocacy included for teaching medical students by the Liaison Committee for Medical Education (LCME), which accredits medical schools, or in training residents by the Accreditation Council for Graduate Medical Education (ACGME), which accredits residency programs. In the absence of such requirements, it is less likely that advocacy programs will be developed for students and residents, and more likely that, when they are, it will be the students who are already interested in doing such activities who participate. That is great, and programs which allow students to be involved and helps “inoculate” them against from losing their interest and commitment will continue to exist (such as several that we have here at the University of Kansas School of Medicine, including our free clinic and longitudinal elective Community Leadership track). However, if these are not expectations of all students, of all physicians, then only a minority will be involved.
Indeed, when we look at the American political landscape, we see a fair number of physicians involved in politics. It could be argued that, in these roles, they are advocating for social, economic, educational, and political changes. What is disconcerting is that the majority of these physician politicians seem to ignore the second half of that sentence, “…that ameliorate suffering and contribute to human well-being”. They are often found among, and sometimes as leaders, in advocating policies that slash the social safety net, decrease funding for public education, and oppose universal health insurance. Too frequently, they act as agents of their own social class than as advocates for those most in need.
That doctors will most often adopt the “agency” role when it comes to issues that most directly affect the health of their patients, that can be arguably seen as “medical”, is very reassuring. I was once at a physician meeting in which a “conservative” state legislator was speaking against a statewide smoking ban. Reassuringly, the vibe in the room was very hostile to the content of her remarks. Sensing that, she turned to a physician from her district who was also very conservative and a political supporter of hers and said “You? Do you agree with this?” To which he shrugged his shoulders and replied, “I’m a doctor!”
The advocacy role is more complex. Not only are many physicians socially conservative and not, perhaps, in support of policies “…that ameliorate suffering and contribute to human well-being,” physicians are busy people who mostly see themselves in the role of providing direct patient care, not advocating for systemic societal change. Even physicians with public health roles may see their advocacy in a much more limited way (for immunizations, smoking cessation, cancer screening, seat belt use, etc.) rather than structural societal change.
I would like to think that all physicians manifest advocacy in the “agency” sense for their patients. It may be wishful thinking to hope that all physicians will manifest advocacy in the “activist” sense, that they will fulfill the AMA’s Declaration by actually advocating “…for social, economic, educational, and political changes that ameliorate suffering and contribute to human well-being.” But if we do not make this a core value for physicians that is ubiquitously taught in medical school and residency, if we do not select students because of their commitment to advocacy, we will have much less of it.
Dobson S, Voyer S, Regehr G, “Agency and activism: rethinking health advocacy in the medical profession”. Acad Med. 2012;87:1161–1164.First published online July 25, 2012. doi:10.1097/ACM.0b013e3182621c25
“Conscience clauses” have become increasingly common in laws about health care as state legislatures seek to limit people’s access to services that they don’t approve of but have not, as yet, been able to make illegal. Of course, it started with abortion care, with doctors being allowed to “opt out” of training requirements for abortion (not that anyone was ever required to “opt in”), and gained momentum with the development of mifepristone (formerly RU-486), the abortion pill, ensuring that pharmacists would not have to fill prescriptions for it if they opposed abortion.
Of course, mifepristone is only sold directly to providers, so pharmacists are not called upon to fill these prescriptions, so the laws moved on to whether pharmacists could refuse to fill prescriptions for emergency contraceptives (the “morning after pill”). A lot of jurisdictions passed laws under the guise of the “conscience clause”, some even permitting pharmacists to not even dispense regular contraceptive pills. Which, of course, can be used for emergency contraception. And which, of course, is not abortion. But so much for the facts.
It is not coincidental that these restrictions have focused on women’s reproductive health. It appears that legislators’ concern is not about “right to life” (which many make a joke of with their opposition to anything that might help people after they are born), and fall into the arena of “women’s reproduction and the things associated with it, like sex, make us uncomfortable and so we don’t want to be involved with it”. In addition, there is persistent undertone of “…after all, these are women, people who do not understand how to take care of themselves and make their own decisions, so we have to do it for them.” This is pretty clearly part of the agenda of the religious right – limiting the ability of women to make their own decisions about their bodies.
Indeed, a victory for women was achieved when emergency contraception was made available without a prescription – and then a step backward was taken when HHS Secretary Kathleen Sebelius overruled recommendations from the FDA and prevented its availability without a prescription to women under 17. Now that makes no sense at all if one is concerned about their health – women under 17 are the most likely to have sex without contraception, to be pressured into sex by men, to not be able to plan whether they are going to have sex and thus possibly become pregnant, to have the self-efficacy to walk into a pharmacy and ask for emergency contraception. So we are going to make it particularly difficult for them? Well, it does make sense for an agenda that says “limit rights where we can limit them” and we can move on from there. Yes, these girls are the most vulnerable. So let us victimize them.
What is particularly upsetting is the usurpation of the language of conscience by those who would restrict women’s reproductive options. We do not hear of conscience clauses about not dispensing Viagra, Cialis, and the like because the loss of ability to have an erection with age is natural. Or for that matter, against cosmetics, or drugs that will treat God-given genetic chronic diseases. A joke, but not so funny, supposes a Christian Scientist pharmacist who refuses to supply any medication. This usurpation of language is parallel to the current ownership of the language of “life” by the anti-abortion movement. The implication is that pro-choice people do not value life, but our argument is that we value the life of the born – the woman, children who are alive, and those who might be born.
Into this discussion comes the voice of Lisa H. Harris, in a New England Journal of Medicine “Perspective”, September 13, 2012, “Recognizing conscience in abortion provision”.[ Dr. Harris argues that the provision of abortion is also driven by conscience, and that this right to conscience has not been protected. So firmly has “conscience” been associated in public discourse with the right to refuse to do abortion, the idea that conscience can be, and is, central to the decision of the abortion provider is almost jarring. And yet it is certainly true.
Harris refers to the work of the physicians who practiced abortion at great risk to themselves, their reputations and their ability to continue to practice medicine in the years before Roe v. Wade:
The conclusion that abortion provision is indeed “conscientious” by this standard is best supported by sociologist Carole Joffe [, who showed in Doctors of Conscience that skilled “mainstream” doctors offered safe, compassionate abortion care before Roe. They did so with little to gain and much to lose, facing fines, imprisonment, and loss of medical license. They did so because the beliefs that mattered most to them compelled them to. They saw women die from self-induced abortions and abortions performed by unskilled providers. They understood safe abortion to be lifesaving. They believed their abortion provision honored ‘the dignity of humanity’ and was the right — even righteous — thing to do. They performed abortions ‘for reasons of conscience.’”
There are no doctors who showed more courage, more conscience, than these pre-Roe abortion providers. But the power of this commitment, of this conscience-driven provision of abortion, has not lessened in the post-Roe years. The ever-more restrictive laws passed by state legislatures, seasoned with the constant picketing and harassment of patients, leavened with bombings and fires, and finally consummated by the murder of abortion providers, should leave no doubt about the moral strength of these people. The testimonies on “Why I Provide Abortions”, on the website of Physicians for Reproductive Choice and Health (PRCH), or those its video “Voices of Choice” (including the voice of George Tiller, MD, murdered in 2009; see my post In Memoriam George Tiller, May 31, 2009) are clear and moving; they come from physicians who know that, if they do not provide safe abortions, women will obtain them unsafely at the risk of their lives:
"My experience goes back to my residency training at Boston City Hospital. I was appalled by the intermittent but steady stream of otherwise healthy young women dying in front of my eyes from septic shock due to unsterile, botched procedures.”
"When a woman acts in a responsible way, doing what she believes is in her best interests and the best interests of her family, she's being moral.”
“I believe women shouldn't have to explain to governments, religious groups, those of another opinion or the patriarchy at large that they've made a decision to deal with the condition of their own bodies.”
Dr. Harris indicates, correctly, that the same standards of conscience should be applied equally: “Certainly, if abortion providers’ conscience-based claims require scrutiny, so do conscience-based refusals, to ensure that refusals are indeed motivated by conscience and not by political beliefs, stigma, habit, erroneous understanding of medical evidence, or other factors.”
There are many people opposed to abortion who are sincere in their opposition and motivated by conscience. Beyond that, e.g., refusing to fill contraceptives, is getting to the point that maybe it is time to seek a new field of work. But to imply that concern for women and conscience only apply to abortion and contraception opponents and deny the conscience and morality of those who provide such care is unethical and dishonest. George Tiller’s motto was “Trust Women”, but many people don’t.
Another voice from “Why I Provide” says it simply and profoundly:
"I provide abortions because I value the life and health of my patients, and because when abortion is not legal, safe and accessible, women suffer and die.”
That is a conscience clause.
[1 Harris, L. “Recognizing conscience in abortion provision”, NEJM 13Sept2012;367(11):891-3.