Learning about end-of-life care

The "death panel" frenzy propounded by Sarah Palin and an army of uninformed and ill-intentioned allies when the administration proposed paying physicians for conversations with their patients about end-of-life care has come to a quiet conclusion.

Medicare  has finally authorized payment for advanced care planning "at the discretion of the beneficiary" in both the outpatient and hospital setting. These discussions require sensitivity, thoughtfulness, and time. Medicare will pay $86 for the first 30 minutes and up to $75 more for 30 additional minutes. The fee is far from lucrative when overhead costs for maintaining an office are taken into consideration, but it recognizes and compensates physicians for a core medical responsibility - collaborating with patients at every phase of life.

The moral of this happy story is that although it took six years, it shows that we are capable of moving beyond disinformation and hysteria and understanding what caring medical practice requires!

(For previous posts about "death panels" see here, here, here and here.)

Anna Stubblefield: Victim and Perpetrator

An article in  yesterday's New York Times told a remarkable story about Anna Stubblefield, former chair of the philosophy department at Rutgers University, who was convicted on two counts of aggravated sexual assault for having sex with a 31 year old man who the jury concluded was so severely disabled he could not consent to a sexual relationship.

The story hinges on "facilitated communication," a scientifically discredited practice that claims to achieve access to the hidden thoughts of persons with autism and other conditions that have hitherto precluded communication. In the technique, the "facilitator" claims to reach the "communication partner" by assisting the partner to type responses to questions.

I'd somehow never heard the fascinating history of facilitated communication until I read the NYT article. Imagine how moving it is to parents when they are told that their supposedly disabled offspring tells them that he is now overjoyed to be able to communicate and that he loves them very much. And imagine how horrified families are when the facilitated message accuses them of incest and other forms of violence.

More About Unethical Drug Prices

As if the example of Turing Pharmaceuticals and the 5,000% price increase for Daraprim weren't enough, two days ago the New York Times described another example of blatantly unethical - but entirely legal - drug  pricing.

Horizon Pharma has combined the generic equivalents of Motrin and Pepcid into a single pill, Duexis. Taking one of each would cost no more than $40 per month. For the single pill that combines the two ingredients, Horizon asks for $1,500! To circumvent the stunned look a pharmacist would give to a patient who brings the Duexis prescription into the pharmacy, Horizon encourages physicians to send the gold-plated prescription directly to a mail order pharmacy that will send the medication to the patient and deal directly with insurers.

Several decades ago I saw a patient for whom I wanted to prescribe a low dose (25 milligrams) of the antidepressant Zoloft. At the time the two available dosages - 50 and 100 milligrams - were priced the same. The patient was a thoughtful person and I was interested in the relevant ethical issues, so I asked if he thought it was fair for me to prescribe the 100 milligram pill and ask him to divide it into four pieces. He initially said "no," and I prescribed the 50 milligram pill to be broken in half.

Some minutes later he returned to my office. "I've been thinking," he said. "I survived the Nazis during World War II because other people took risks to protect me. I want to do this little bit for the public good. Why should the people who help pay for my insurance spend more than is necessary for me to get my medication?"

Unfortunately, Horizon does not share my patient's moral vision. Although its actions are legal, if Hippocrates were reincarnated, here's the dialogue that might ensue:

Hippocrates: "Didn't I make 'first, do no harm' clear in my teaching?"
Horizon: "What harm are we doing? Duexis is a good medication. And the patient isn't paying - it's the insurance company!"
Hippocrates: "We didn't have insurance companies in my day. But even an old timer like me can understand that the insurer's money comes from all the working people who pay into the insurance pool. For every patient who uses Duexis instead of the two generic ingredients separately, you are taking $1,460 per month out of the pocket of working people. That's harm! You should be ashamed of yourself!"

When I Googled Horizon a few minutes ago I was happy to see that the revelation of its legal but unethical practice has sent its stock tumbling. The invisible hand is giving the company a well-deserved slap!

How Three Competing Ethics Frameworks Let Drug Prices Run Wild

A few weeks ago I gave a talk about the ethics of high cost pharmaceuticals at a Connecticut Health Council event. After I accepted the invitation I was initially at a loss about what to say. Simply excoriating Turing Pharmaceuticals for raising the price of Daraprim by 5,000% would be too easy. But when I asked myself what allowed Turing's actions to be grossly unethical but completely legal, I saw that three competing ethical frameworks - "good vs good" conflicts - help explain why we've been so impotent in relation to drug prices.

1. Free market theology vs ethics of care. A teaching from Milton Friedman's Capitalism and Freedom has achieved the status of unquestionable religious truth for many: "There is one and only one social responsibility of business - to use its resources and engage in activities designed to increase its profits so long as it...engages in open and free competition, without deception or fraud." But many of those who are deeply involved in health care, including many in the pharmaceutical industry, see their work as a calling, in the spirit of Hippocrates, who articulated the ethics of care 2500 years ago. Both frameworks embody ethically admirable values. But in many sectors of the US health system, with the current pharmaceutical industry as a prime example, the theological commitment to free markets is overly dominant.
2. Life is priceless vs opportunity costs matter. More than 30 years ago, in  his deservedly admired evocation of the ethics of care, Norman Levinsky invited physicians to believe that the sacredness of their calling meant that the opportunity costs of our interventions should not be considered: "physicians are required to do everything  that they believe may benefit each patient without regard to costs or other societal considerations. In caring for an individual patient, the doctor must act solely as that patient's advocate, against the apparent interests of society as a whole, if necessary...When practicing medicine, doctors cannot serve two masters...The doctor's master must be the patient."
   
   These are stirring words, and in my teaching I've found that most physicians embrace them with pride. But looked at closely, it's clear that Levinsky's passionate embrace of the ethics of care led him into the error of ignoring opportunity costs. When physicians indicated solidarity with Levinsky's position I sometimes responded as follows: "Doctor - congratulations on your altruism. If your patient needs a heart transplant and you are the only match, you're prepared to donate your own heart!"
   
   Until recently, the "life is priceless" ethic led us physicians to ignore the impact our interventions imposed on individuals and wider society. Nurses, social workers, and other health professionals have been more attuned to the way the over-costly health system harms population health by undermining income and other social determinants of health. Only now, with drug prices going through the roof, are we physicians beginning to see the limitations in Levinsky's noble and inspiring rhetoric.
3. Government is the problem vs government is [part of] the solution. My generation (I was born in 1939) was conceived in the New Deal era, came into adulthood during Lyndon Johnson's Great Society movement, and have watched the pendulum swing from inflated confidence in government action to the nihilism of the Tea Party and the Freedom Caucus.

The crucial point is that the three conflicting frameworks represent "good vs good" conflicts, not "good vs evil." As such they call for a political culture that is prepared to follow Winston Churchill's advice:

Nationally, we lack the courage to listen. This has led to a failure to balance the three competing ethical frameworks. Runaway pharmaceutical prices reflect our theological commitment to free markets, the reluctance of the medical community to consider the opportunity costs imposed by health care expenditures, and the national distrust of government action. Mature organizations speak and listen. At present, our political culture cannot do both. We see one result of the national skill deficit in our inability to rein in pharmaceutical pricing.

From Clinical Care to System Improvement

A reward I derive from working half time is the flexibility to take on labors of love, one of which is being a member of the ethics committee at the Commonwealth Care Alliance.

Commonwealth Care Alliance (CCA) is a not-for-profit, consumer governed care system for Medicare and Medicaid beneficiaries with complex medical problems. It embodies the values that have guided my whole career, so when I was invited to join the CCA ethics committee I jumped at the chance.

Here's a story (slightly edited) from the every-other-week email circulated by Bob Master, CEO of the organization:

RA is a 61-year-old man with poorly controlled diabetes and severely compromised circulation in his legs who is living alone with a very limited ability to care for his complex medical issues. RA has also been battling a long-standing heroin addiction without success until he was prescribed Suboxone, which for many like RA, is a newer, more effective and safer treatment approach than Methadone. With Suboxone treatment, RA has experienced a full recovery from his addiction with dramatic improvement in his ability to live independently. 

 During his recovery, RA fell and sustained an ankle fracture that required surgery. Because of his diabetes, very compromised leg circulation, and requirements to avoid “weight bearing” on his surgically repaired foot, post hospital skilled nursing facility care was deemed essential. 

 However, existing regulations today prohibit individuals requiring Suboxone to be admitted to Skilled Nursing Facilities. RA’s primary care physician, and CCA Medical Director, Stefan Topolski, explains it this way: “To find that something so simple, so easy and so safe to prescribe as Suboxone – somehow becomes an impediment to needed skilled nursing facility care even when physicians providing care in that facility are certified to prescribe it, makes no sense.”

 Nurse practitioner Cary Hardwick explained that RA had been very well maintained on Suboxone. “It dramatically changed his life and his ability to live independently.” RA agreed, saying “It kept me from doing a lot of bad choices.” 

So without other options but suboptimal care in a compromised home situation, a home care plan with a high likelihood of failure was instituted. Sadly, despite best efforts, significant infection occurred at the surgical site. Ultimately, RA needed to have an amputation below his knee.

[A short video featuring RA, Cathy Hardwick, and Stefan Topolski, can be seen here.]

This is a powerful and painful clinical story. The reason I'm publishing it in a blog on organizational ethics is what Bob Master said next:

RA’s story did not need to happen, and likely would not have happened if policies were in place that promoted rather than restricted the use of effective ongoing addiction medications such as Suboxone in skilled nursing facilities. Clearly, this policy and probably many others need to change. It should come as no surprise that we are the first entity to uncover this problem and the first entity engaged in promoting such needed changes.

Accordingly, I’m proud to report that our skilled nursing facility team is now actively working with the Massachusetts Department of Public Health to change this counterproductive regulation so that individuals like RA in need of SNF care can be admitted to SNFs while being prescribed these important medications. It is admittedly a small step but I am proud to say a very important one. 

It's all too easy for us clinicians to throw up our hands in despair when we encounter a problem like the one that arose in RA's care. And it's easy for the wider public to fall into cynicism about "dumb bureaucracy." The story from CCA illustrates the kind of quality improvement from the ground up that our health system needs. I know the Massachusetts Department of Public Health. It's not a nest of "uncaring bean-counting bureaucrats." But we're all capable of making mistakes. The key skill our system needs is the kind of activism the story illustrates - moving from impediments to giving the right kind of clinical care to improvement of the system.

Hats off to the Commonwealth Care Alliance, and to RA, who wanted his experience to be used to help others!

[For a 2011 post about the Commonwealth Care Alliance, see here.]

Nuka & Organizational Ethics

Yesterday morning an email with the subject heading: "Strong Patient-Provider Relationships Drive Healthier Outcomes" appeared in my in-basket.  I might have thought - "ho hum, been there/know that" and deleted the message, except that it came from the Harvard Business Review. I was curious. What made business folks interested in a topic that every seasoned primary care clinician has known about for years?

It turned out that the authors have been doing  what business schools do so well - studying exemplary primary care systems as a basis for developing teaching cases. What struck me in the Business School findings was that the outstanding organizations they were reporting on had not simply preached about the importance of strong clinician-patient relationships: they had engineered the organizations themselves to encourage and facilitate excellent relationships.

In our teaching of medical students and other health professionals we emphasize the values and behavior patterns of individuals. This is an important starting point for health care ethics. But as the discussion of the Southcentral Foundation in Alaska demonstrated, a properly designed and managed organization can point clinicians in the right direction and make it easier for us to get there.

In the 1990s, Southcentral Foundation, well-described in an excellent article by Katherine Gottlieb, president and CEO, looked into its heart and reconceptualized its mission as being about relationships:

Alaska Native leadership recognized that the core product is something bigger than just tests, diagnoses, pills and procedures. It is about human beings and relationships – messy, human, longitudinal, personal, trusting, informing, respecting and accountable relationships...If a practice or organization really believes that the core product is relationship – that is, partnering to make a difference over time – a fundamental change is required. Where money and time are spent, what work staff members do, who is hired and how staff are trained – every action is intentionally designed to optimize relationships.

Southcentral calls its approach the "Nuka System of Care." "Nuka" is a native Alaskan word meaning "big living things." Gottlieb describes four key ideas driving the "big living" Nuka system:

1. "The customer drives everything." Southcentral thinks of those it serves as "customer/owners." The SCF approach goes well-beyond the current buzzword - "patient centered care" - which often connotes an empathic attitude but not redesign of services to meet patient preferences.
2. "All customers deserve to have a health care team they know and trust." It's easy to endorse this principle. What distinguishes SCF is the actions they take to facilitate trusting relationships, not simply their words. Words are cheap. Making the sentiment a reality takes sustained work over time.
3. "Customers should face no barriers when seeking care." 75-80% of the appointments are for same-day care. That says it all!
4. "Staff members and supporting infrastructure are vital to success." Again, what counts is well planned, consistent devotion to this aim at all levels of the organization.

The crucial insight arising from the Harvard Business School project, which is being conducted in collaboration with Center for Primary Care at Harvard Medical School, is that organizations are moral actors, just as individuals are. Strong clinical relationships promote trust and health. In a health system in which organizations play an ever increasing role, we need to focus on and strengthen the moral behavior or organizations as well as individuals.

[For readers who want to delve further into the concept of organizations as moral actors, see this article by my friend David Ozar, an early leader in thinking about the ethics of organizations.]

I'm Back

It's been two years since my last substantive post on this blog ("The Right Kind of Love Between Doctors and Patients"). I'd shifted my blogging energy to Over 65, a blog about aging issues published by the Hastings Center. My co-editors and I put that blog to rest in the spring, and I'm just now getting back to Health Care Organizational Ethics, which I started eight years ago.

If I'd been smarter I would have chosen a less wonky title, especially since over the years I've written about much more than the ethics of organizations. (Not surprisingly, the posts that got the most attention are those filed under the "Doctor-Patient Sex" tab!) But organizational ethics continues to be my central focus in ethics, so I'm sticking with the original title. My aim is to post at least weekly.

As always, I'm eager to hear thoughts and comments from readers.