Medicine, Politics, and the Individual Patient in Need

My friend, Mike Millenson recently “tweeted” a link to a heart wrenching story by a physician in Australia that deserves to be read by all concerned with patient care.  Dr.Ranjana Srivastava tells a story of discovering the true person behind the disease as she treats a woman who has metastatic pancreatic cancer who speaks no English and is awaiting word on her asylum request to stay in Australia. 

The story has many levels.  At one level it is about the physician who starts out annoyed by the non-English speaking patient who is missing appointments for her chemotherapy.  It moves into hearing the story through an interpreter of the patient being a former teacher, escaping from a war zone with two small children, after her husband had been killed.  It then moves into the struggles of being a refugee in a strange country, trying to work through the system to take care of her children, while addressing her own probably terminal illness.  The author eloquently defines the woman she is treating as one who is “cursed first by geography and then illness” as she communicates a subtle political message about the plight of refugees.  She writes,

“You see, most of my friends, even the professional ones, have never met a refugee – they form their views from tabloids, and the increasingly shrill sound bits of politicians.  But the thing is, when I look at you, I don’t see a queue-jumping, illegal, unauthorized, undocumented alien or for that matter, any of the names used to strip you of your dignity.  I only see a thoughtful woman, a loving mother and a vulnerable patient, with no husband and two young children…”

The story then ends with the physician returning to the safety of what she knows best and is trained to do.  “We return to your pain…”  The end is one of the powerlessness of medicine in a world that treats refugees poorly. 

I empathize with the politics.  I am the children of immigrants – refugees from Europe – who escaped the horrors of the pogroms and the Holocaust which was the fate for Jews in Europe in that era.  I do believe that we need ways to help those who must flee their native lands to find new and better lives for themselves and their children.  We must find policies to welcome those who cross borders; even crossing oceans for a chance and make them part of our own societies.  But I do not have the answers for the complex questions that are part of the dilemmas that governments face as they try to develop answers that are humanistic and also protective of the people they serve.  I recognize that there are rarely simple answers to these questions.  I am a physician and I must help people in their reality, not in the reality I wish them to be in.   I understand the desire of the physician who writes this as a clarion call to be more welcoming to those people who become refugees through their own courage and fortitude rather than any malevolence.   However we also must speak for this particular woman in need right now.   Changing policy and changing attitudes takes time and this woman with children who has an awful illness has no time.  Powerlessness and a return to the purely medical need not be the default for physicians. 

Therefore while I sit in awe at the writing ability of the physician, and am truly touched by the patient’s story, I can’t help but believe that it misses a critical element.  That element is what this woman, who has a horrible disease that is likely to kill her, really wants and what her goals truly are.

The physician has started to know who this person is, with the help of an interpreter however in this article she has yet to get past the refugee’s story to the person’s real hopes and dreams at that point in time.   I can try to guess based on all this woman went through to get her children safely to Australia.  I suspect it has to do with building a better life for her children.  I want to know what the physician might do to help that woman meet her goals and make a better life for her children even if she succumbs to the disease, as it likely.  I want to know if the physician can get past her own comfort level, dealing with chemotherapy, pain management, and the like to address issues such as the help the woman may need in shopping for food, getting her children to school, and planning for her children’s care after her death. 

I know that the physician may not be the correct person on the health care team to address all of these issues.  Other team members may need to take the lead to find ways to help the patient with these life difficulties.   However the physician should note that these important life issues may have priority over pain, disease and treatment protocols for that patient.  The starting point for all this must be asking the patient what her hopes and dreams really are as the most valid goals are the patient’s own.

 

Thus while I want physicians to take political stances as I believe all citizens should, and I want them to be skilled with the biomedical aspects of care, I especially want physicians to know who their patients are as people, as unique individuals and understand the patient’s values and goals.  I want physicians to focus on helping people through the difficulty of illness even if other healthcare team members take the lead in addressing those legal, social, psychological, financial and logistical issues.  I want every physician who sees a patient to also see the whole person and address all the issues that impact the person’s ability to deal with their life as disease gets in the way.   That is what defines medicine as the calling it is and should be.  

It’s the Little Things that Matter: Fighting Logistical Toxicity

Many people struggle with the life issues and the small decisions that occur every day when one is dealing with an illness or a family member’s impairment.  Whether financial issues related to the medical bills, attempting to make sense of insurance statements, trying to figure out who will walk a dog when going for a test or therapy, or just balancing a job schedule with appointments for doctors, the challenges are real and affect the quality of care and the cost of care.  All this is true whether you have a critical illness, a chronic disease, or an acute “minor” problem (I always teach that a minor illness is something someone else has and that everything I or someone I love has is major). 

Most attempts to address high health care costs do not address these small decisions that, in aggregate, have an outsized effect.  Current paradigms in the quest to lower health care costs usually ignore this approach of addressing the small everyday life disruption of all illness.  In the healthcare and health benefits world, we are told that focusing on the 20% of people who generate 80% of disease costs or people spending healthcare dollars in the last six months of life should be the focus.  Yet focusing only on the 20% of people and those in the last six months of life means we ignore many who are in need and who are flailing around a confusing and often impersonal system.  We are told that computer medicine driven by Dr. Watson from IBM is the answer and that the best doctor is a computer.  But computers cannot comfort someone who is dying or understand that an evidence based guideline that requires one to have daily therapy instead of picking up children at school is untenable.    Current paradigms often imply that the problem is that doctors don’t follow evidence based guidelines or patients are not doing what they should be doing.  Yet assuming doctors don’t know what to do and that patients are not acting in their own best interest is likely to be an overly simplistic and false assumption. 

We need new paradigms.  Often the issues are a lot smaller.  Like the man who could not go into the hospital for his worsening congestive heart failure because there was no one available to feed his cats, or the single mother who could not go to a specialist appointment for her worsening diabetes because she could not afford to lose another day of work since she had used up her sick time when her children had the flu, or the gentleman who went to the ER for a sore throat at 2 AM  because his only free time while working two jobs is between midnight and 6 AM. 

The right paradigms should address how to eliminate unnecessary health care costs and look at the world of health care through a patient’s eyes – a patient who has a family, friends and other priorities that are not health related.  The right paradigms should look at what really drives doctors and patients to make decisions that may drive up costs and bring little or no value to patients and families. Perhaps the real answer is to create new ways to look at the problems. 

In a recent post in Forbes, Elaine Shattner uses the term, “logistical toxicity” (first coined by Shelley Fund Nasso of the National Coalition for Cancer Survivorship) to describe the ill effects that the “administrative burden of healthcare” has on patient care and on cost.  While the article focuses on cancer care the logistical toxicity is seen with all illness.  These administrative burdens, and the competing life priorities that are often even more important, are difficult to manage when one is ill.  Physicians and other health professions cannot be expected to help with these life issues as they are ill prepared to recognize and address those factors.  Elaine Shattner in her post says,  

“Chores – like processing medical bills, holding on the phone for providers, filling out and submitting paperwork to insurers – can chew at a healthy person’s time, causing annoyance.  For someone who’s chronically ill, these tasks and additional, long-term responsibilities – coordinating frequent medical appointments, and arranging for time off at work, and for childcare or caregiving of another adult – compound the physical and financial toll of disease.”

It also goes beyond the chores themselves.  Those increased burdens and those competing life priorities create tremendous emotional turmoil and can cause a sense of social isolation.  One feels as though there is no one to help, because the benefits and the health delivery systems have become so disjointed that they cause headaches instead of help.  As Ms. Shattner says, “The potential failure to take care of everyday tasks can lead to feelings of defeat or helplessness, besides exhaustion.”  Your doctor does not really understand your health benefits, and may or may not even ask you about the life challenges that are getting in the way of the treatment of your illness – that logistical toxicity.  Your healthplan is willing to help you understand your benefits and claims, but not deal with the life issues that are sitting in the background affecting everything else. 

When we started Accolade, we realized that the health care system had become so complex and so difficult to deal with that it could be dangerous to people’s health and could actually increase costs.  As we looked into the problems from a patient’s point of view, we found two parallel systems at play – a health benefits system that was attempting to put incentives, rules and regulations in place to police care, and a health care delivery system that was attempting to become more efficient and of higher quality by a division of labor approach in which higher paid team members, such as physicians, were only involved in activities that made the most of their expensive time.  The algorithms driving care were designed to prevent errors and theoretically improve care.  However, from the patient’s point of view, all this created fragmentation and a movement towards “one-size fits all” medical and health benefits approaches with its associated depersonalization.  If you didn’t fit in to the rules and algorithms, you suffered.  The paradigms for efficiency, we found, were often contributing to inefficiency and lower quality care from the patient’s perspective.   Those paradigms that were being used were often not helping people in need. 

We decided to create a new approach and a new profession based on a belief that all people with illness of any type need help, not just those people with high cost complex illness.  Our hypothesis was that costs would be lowered by immunizing against logistical toxicity, and supporting people through the emotional roller coaster that is associated with illness.  We tested whether we could impact the changes in the social structure of family and the life challenges that are associated with illness of any kind.    All illness, even “minor” illness can be disruptive and interfere with life context while inducing fear, sadness and anger. So we built databases, trained professionals to deal with this toxicity, and developed operational processes.   In a sense we went about building immunization, antidotes and treatments for logistical toxicity and the social and emotional toll it takes.  We knew that this was not a simple problem but something that demanded a new profession based on trust, with specific expertise and the support of proper data and information systems.

We determined early that just solving the problems as they occurred would not be effective.  We had to provide ongoing assistance to help people avoid these problems in order to be able to solve issues early so their toxic effects would not multiply and become petrified and even more difficult to reverse.  We learned that when people are faced with logistical toxicity, they develop suspicion and lose trust in the system to a point at which it is hard to overcome.  We found that we had to form trust early in the process and even before the problems occurred.  In the 8 years since starting this new model, we have proved it works – costs are lower and from a patient’s point of view, care is better.

I am fundamentally optimistic about health care as long as we continue to challenge existing paradigms.  I believe that our initial experiment at Accolade, and other similar approaches that address patients as people and not diseases, will become the norm.  New professionals will help address all of the challenges of illness, not only the disease pathology, providing value from a patient’s point of view.  We will continue to find new approaches that will eliminate the scourge of logistical toxicity.  Most importantly, we will not allow health care to become so rigid that it ignores the infinite tapestry of our diverse population and the unique life issues that each person brings.  

Confusing Populations with Individuals in Health Care

The doctor patient relationship is a sacred one that is ultimately driven by a person in need, putting their trust and even their life in the hands of a health professional.  The bond between a doctor and a patient is formed with the expectation that it will be met by total dedication to the patient’s well-being by the health professional.  However, in recent years, physicians, nurses and others in the caring professions have been challenged to take a broader societal, or population view of those they serve, especially when it comes to cost. Our current high cost of health care can limit needed access to care with the burden often falling on portions of our population who are the most at risk for health problems.  Who better to address this than the health professionals who care for people, so the argument goes.  The theory is that the population view, especially when taken by individual health care providers, will provide more equity in health care and better treat all those in need.  The physician and the health care team then becomes the steward of the health care dollar for our society as well as the caring agent focused on the patient.  But is this an appropriate role for the physician?  Do these newer efforts towards placing societal costs in the equation of “best medical care” for an individual risk creating a system in which physicians have more responsibility to their particular system or to the total society than to the actual people in their care?  

The American College of Cardiology and the American Heart Association (ACC/AHA) have just published a joint statement on cost/value methodology in clinical practice guidelines and performance measures.  They have tried to thread that needle of societal needs for cost control and individual patient care.   The result is a properly nuanced approach that acknowledges the difficulty of the task as well as the current reality that the challenge cannot be ignored.    They note, in their executive summary that “from a societal policy perspective, a critical healthcare goal should be to achieve the best possible health outcomes with finite healthcare resources.”  They further note that “individuals bear the burden of adverse health outcomes, yet costs typically are shared by society (e.g., by families, employers, government, premium payers, fellow employees, taxpayers).”

All true.  Yet what should the role of the physician be?  And how should guidelines from esteemed organizations such as ACC and AHA address these issues when they set standards for individual care?  Should the physician follow a guideline that directs the care they render to be influenced by the fact that the treatment may not be of high value to the payer even if the doctor and patient believe it to be high value in that particular case for that particular patient?  Perhaps a bigger question to ask is whether the patient should trust a doctor if the doctor is being driven by a societal equation instead of an individual patient equation.  Ultimately, this is a question of whose interests – society’s or the patient’s – are paramount when the medical decisions are being made.  I believe that in all cases the physician should focus on the individual patient’s interests for that is the essence of medical care.    While societal costs are extremely important and must be taken into account when setting health policies for a nation, there is something different that is going on when a patient is in an exam room with a doctor, a nurse, or another health professional.  That difference is the sacred trust when one person opens themselves to another in the hope of being cared for when in a time of need. 

But there is often less conflict here than may be apparent.  When the patient’s values and goals are paramount, cost often enters into the equation – it just isn’t the societal cost but the individual cost.  Physicians today are not very good at assessing their patient’s goals, needs and values when they are outside of the purely clinical.  When those individual goals enter the realm of finances, competing priorities (such as taking care of people they love), or the patient’s spiritual needs and beliefs, as evidenced by research done on context by Saul Weiner and Alan Schwartz of the University of Illinois over the past fifteen years the physicians’ ability to recognize, assess and address those needs is poor at best.   We know that patients assess the treatments recommended by physicians based on their own internal equations and cost is often a component of those individual decisions.  The good physician, who forms a true trust bond with the patient, must take that all into account.  When that happens, total societal costs are more easily controlled, as has been previously suggested in a study done by Weiner and Schwartz in assessing the costs of “contextual” errors in health care.  We see that at Accolade as we help patients address their life needs, find their voice and communicate their goals to their doctors, nurse and therapists and see total costs go down. 

It is clear therefore that, as the ACC/AHA statement suggests, that “the need for greater transparency and utility in addressing resource issues has become acute enough that the time has come to include cost-effectiveness/value assessment and recommendations in practice guidelines and performance measures” but the inclusion of “performance measures” does worry me.  If doctors are judged by their ability to meet societal standards of cost effectiveness will that change the doctor/patient relationships and the agency that the doctor now has for the individual in their care?  We clearly need more transparency and we must be able, as health professionals to translate that cost information into useful knowledge to help patients with their decision making however our performance measures should be based on how well we address those individual health care cost needs and the value for that individual.  That is different than being measured by how well we meet the societal goal of lowering health care costs.

The ACC/AHA statement does address how these guidelines are to be used and makes the statement that “the value category should be only one of several considerations in medical decision making and resource allocation.”  But resource allocation for one patient is an entirely different issue and must be based on the patient’s values, not the values of the physician or society.  In the published article, the ACC/AHA committee rightly states that “Care is of high value if it enhances outcomes, safety, and patient satisfaction at a reasonable cost.  Care is of low value if it contributes little to outcomes, safety, and satisfaction or incurs an inappropriately high cost.”  I would add the words “from the patient’s perspective” to those words.  Ultimately, we must understand that as physicians – as health professionals – we are servants to and advocates for those in need and we must define outcomes, safety, satisfaction and even costs from the patient’s point of view.  Until we develop guidelines and performance measures that understand and acknowledge that fundamental agency of the health professional for the individual patient, we will neither save money nor improve care but will only erode the trust that is the cornerstone of health care.