Complex Healthcare Needs
F I V E H E A L T H S T O R I E S
9 pages — 1 —
INTRODUCTION
“A thorn tree is climbed by its knobs,
not its thorns.”
South African proverb
^
“As long as I hold you to be inferior,
I render myself to be inferior.”
Ethiopian proverb
During their career, every Primary Physician will encounter a small number of persons with unusually intense Complex Healthcare Needs. Usually, these resident persons require high-cost healthcare that is related to a congenital anomaly, mental health disability, chemical addiction, cancer, pervasive degenerative diseases, or an immune tolerance disease. It is possible to formulate five stories to represent this small segment of resident persons, 1 in 20, who accounted for 82% of our nation’s healthcare spending in 2017.
The patterns and content of Primary Healthcare that are ultimately necessary to promote Stable HEALTH for these resident persons must first apply to all resident persons. Improving the cost and quality, i.e. efficiency and effectiveness, of our nation’s healthcare will depend on this Stable HEALTH commitment for every resident person. Since on onset of Complex Healthcare often evolves unexpectedly, the spending escalation that inevitably occurs from the availability and accessibility deficits associated with their ongoing Primary Healthcare.
Remembering the proverbs cited above, a resident person’s sudden need for Complex Healthcare Needs is often unpredictable, as in the healthcare for women during an unstable pregnancy. To the extent that a comprehensive care plan is periodically revised for each resident person, as personalized by their Primary Physician, the better able a resident person’s healthcare for new Complex Healthcare Needs will achieve an improved outcome that is equitably efficient and predictively effective.
A thorn tree is a good analogy for recognizing that the “nubs” for Stable HEALTH are not easily identifiable. And, the loss of Human Dignity in the midst of heroic Complex Healthcare Needs is often profound. A special feature of enhanced Primary Healthcare should be its search for unique strategies during each encounter that will support the emotional and intellectual autonomy of every resident person. The stories below briefly describe what happens currently.
THE STORIES
STORY ONE
The birth of John occurred several weeks before the ideal time. He was premature by about 8 weeks. Because of his premature birth, John developed breathing problems that required the assistance of a breathing machine. During the first month of his life, it slowly became steadily clear that John’s lung function was not improving in the usual manner.
His breathing problems worsened when pneumonia occurred because of his immature lungs and immune system. He grew slowly and required artificial assistance for nutrition as well as for his breathing. Eventually, he required surgery to create an artificial opening in his throat for breathing and another artificial opening in his abdominal wall for feedings directly into his stomach. It was soon 3 months, then 6 months, and finally 9 months later to become strong enough to possibly leave the newborn intensive care unit. He had been living there since birth. There were many problems to be solved. A skilled nursing home did not exist locally, as yet, for very sick children with severely Complex Healthcare Needs. The only hope, and probably the best solution, was to go home.
To leave the hospital, he would require nursing care for eighteen hours a day, continuous oxygen for his breathing, an incubator for sleeping, and a very large variety of supplies. It took several days of training John’s parents for them to understand the overall treatment plan. The nearest rescue squad unit was given the exact directions and location of John’s home. In the event of a power outage, John’s parents installed an emergency generator, especially for the uninterrupted use of his artificial respiratory and feeding equipment. In addition to 18 hours of daily home nursing care, the home health agency also provided further emergency backup. It seemed too good to be true, but John did go home after nine months in the Newborn Intensive Care Unit. There were many specialists involved, and his general pediatrician made several home visits in an attempt to define a “doable” reconciliation of his care plan. — 3 —
Eventually, the cost of John’s healthcare exceeded the $1,500,000 coverage limit of his father’s health insurance policy. The parents considered petitioning the Juvenile Court under a “child in special need” category and have the Juvenile Court consider ordering the State to pay for his health services. The Juvenile Court would become the guardian, and his custody would remain with the parents. The State was reluctant to set this financial precedent and refused. Fortunately, the State legislature established a catastrophic insurance plan. Even with the catastrophic health insurance plan, the family encountered many nearly insurmountable obstacles in the care of John. The challenges required an effort to resolve these obstacles that left them emotionally and financially drained. Eventually, John died of his chronic lung disease when he was about 3 years of age.
COMMENT Our nation has no overall health insurance strategy that will automatically coordinate the payment and quality of care in such situations of intensive Complex Healthcare Needs. The NATIONAL HEALTH Proposal, “PAGE” 5 describes a new institution for our nation to promote a plan to manage the accessibility problems similarly faced by John’s parents that eventually involved four sources of payment: his parents, private insurance, catastrophic insurance, and government (“Medicaid”) funding.
Currently, there are federally mandated, but isolated, catastrophic insurance programs such as Worker’s Compensation, chronic renal disease, and black lung disease. A disabled person could also qualify for Medicare as well but only after 36 months of disability. In the case of John, the state’s Medicaid program provided supplemental financial support. Sadly, it becomes the obligation of each person, or their guardian, to “coordinate their benefits” among alternate payers. Nationally, these circumstances represent the most common precipitating cause for a person to file for a juridical determination of bankruptcy.
STORY TWO
Bill was born with cerebral palsy. Among many other attributes, cerebral palsy represents a condition that interferes with the ability of a person to coordinate the movement of their arms and legs when needed for independent living. For severely affected children, cerebral palsy requires nearly total care for a person around the clock. Many, but not all, persons with cerebral palsy will also have trouble thinking about and planning for their own Personal Survival Plan. During Bill’s first few years of life, he was at home with his parents. But eventually, his parents were unable to give him the overall care necessary. He entered a group home that would provide for his day-to-day needs including transportation to a school facility. Federal law requires that a public school provides these services for any person less than 19 years of age and has a developmental problem that interferes with learning. These services are partially funded by this same Federal legal structure.
Occasionally, Bill would have trouble with his breathing from the respiratory infections that were a recurring problem for a handicapped person living in a residential living center. The respiratory problems required frequent visits to Bill’s Primary Physician. For these visits, the reimbursement came from 1) the private insurance of Bill’s father, 2) Medicare since Bill had a disability and was living in a group home, and 3) Medicaid since it pays for the Supplemental medical costs not covered by Medicare or private insurance. This means that the Primary Physician must, as well as all other health service providers, file his reimbursement claims to three different sources of funding.
If the private insurance coverage requires a high co-payment, then the resultant reimbursement by Medicare would eventually determine the actual payment to his Primary Physician. In effect, the complexity of caring for Bill, even for what might normally be a minor illness, requires the expense of pursuing multiple sources of reimbursement by the Primary Physician as well as the other providers of health care for Bill. The three usual sources of payment might even be more complicated, if Bill had required health care for an automobile accident caused by another person. His health care for the accident could require the initial submission of reimbursement claims to an automobile liability source of payment. In effect, the car accident would represent the fourth source of payment for Bill’s health care.
COMMENT In view of the complexity of the payment sources, Bill’s developmental issues, his residential needs, and a complex, comprehensive care plan, each health encounter should entail an overall reassessment of Bill’s healthcare needs, even if only briefly. Like every other person with Complex Healthcare Needs, Bill’s health stability would be best served by using a medical care record that automatically coordinates his comprehensive care plan with the residential facility as well as all other sources of health care, such as his pharmacy. Currently, there is no nationally mandated process for supporting a Primary Physician’s responsibility for coordinating, delegating, or defining the dimensions of healthcare for ANY person with Complex Healthcare Needs. — 5 —
STORY THREE
Mary began her early life as a member of a family that moved from one place to another. Both of her parents maintained a chemical dependency to alcohol. For people with this lifestyle, the alcohol interferes with a parent’s ability to maintain any truly caring relationship, as characterized by honesty, non-critical acceptance, empathy, and warmth. The effect of chemical dependency on the parenting needs of any child can be devastating. Since the parenting deficits represent inconsistent patterns of care, the American legal structure is not able to intervene easily since it focuses on specific events, such as CHILD ABUSE, rather than the patterns of care associated with CHILD NEGLECT. When a child lives with chemically dependent parents, the child is either 1) born to survive, 2) has a vibrant Extended Family for meeting their parenting needs, or 3) becomes a person who is eventually unable to function well as an independent adult because of their Inadequate Personality. Mary was a person in the last group.
Eventually, as an adult, Mary was unable to work because of her own chemical dependency. And, Mary was in the hospital frequently with 1) poorly controlled asthma that was related to her smoking, 2) frequent accidents while under the immediate influence of her own alcohol use, or 3) the effects on her emotional instability from the irregular intake of medications necessary to treat her underlying depression. It is probable that the factors causing her limited self-care capacity had its origin in her childhood’s family adversities. Our social support systems 1) do not easily recognize child neglect during a person’s most vulnerable time of life and 2) have a limited ability to arrange for effective parenting, especially during the first three years of life. Now Mary, who is technically employable but functions as an unemployed person, receives most of her health services from the Emergency Department at a variety of Hospitals.
In effect, each Hospital allocates its resources from private insurance, charitable fund-raising, or government grants to pay for the health care of any person who has no health insurance. Also, the “uninsured” do not have financial accessibility to a Primary Physician. There are isolated exceptions in special circumstances for a person like Mary to receive subsidized healthcare, such as the Indian Health Service, Federal Grants for clinics in under-served areas, ‘free clinics” funded by local donations, or a county health department. Since Mary is often homeless and functionally illiterate, she is unable to follow through with the requirements of contacting her State’s Health Insurance Exchange.
COMMENT Mary represents an example of the significant “uninsured” portion of each community’s resident persons who have very high costs for heroic levels of health care that might be more controllable through a capitated source of Primary Healthcare. Medicaid programs can use a “lock-in” provision to force greater levels of continuity. Basically, it requires a person to have all of their prescriptions written or authorized by one physician and presented to only one pharmacy for dispensing. Notably, this arrangement usually offers no financial incentive for the physician to manage the multiple layers of social issues that patients have in association with a “lock-in” status. It is a remaining variation of the gatekeeper HMO (health maintenance organization) sponsored by private health insurance companies between 1985 and 1996.
In the absence of a “structured” insurance plan, there is no means to organize a special oversight process for the fabric of an uninsured person’s health care. Furthermore, there is no current “certification process” for ensuring that a Primary Healthcare clinic has the skills and resources necessary to offer a high standard of healthcare for people with intense Complex Healthcare Needs. This is especially critical for persons with chronic mental health problems, underemployment, or homelessness. Hospital Emergency Departments are often overwhelmed by resident persons with chronically Unstable HEALTH as worsened by inadequate adaptive skills for the person’s autonomy, similar to Mary.
STORY FOUR
Ann and Joe are happily married. Their STORY begins when their two children are 3 and 5 years of age. Both parents have employment but only Joe’s employer is able to offer access to a group plan for the family’s comprehensive health insurance. Unfortunately, neither Joe nor Ann has disability coverage through employment other than for work-related injuries. This becomes a problem when Joe develops an incurable progressive cancer. At first, he is able to take brief periods of medical leave for his health care needs. Eventually, he loses his job and his health insurance. The cancer specialists and his Primary Physician cannot ethically terminate their health services because of any lack of payment by Joe. The family assets, though meager, interfere with any approval for Medicaid enrollment. Medicare requires 36 months of disability before Joe would qualify.
Fortunately, there are compassionate medication programs by which Joe can obtain access to free medication, except for pain or anxiety. Again, his health care is available through discounted programs by physicians and Hospitals. In prolonged situations, there are some States with catastrophic risk pools funded by a consortium of State and health insurance company contributions. There are no national provisions for State-to-State transfer of any Catastrophic Healthcare Risk management. This would be a special problem if Ann and Joe would move to be closer to their families of origin. — 7 —
COMMENT There is the COBRA Federal act that would allow Joe, if his employer qualified under COBRA, the opportunity to purchase 18 months of health services for himself and Ann through his employer’s group plan. It would also allow him to purchase 3 years of coverage for his children. But who would pay for his contributions when he has no income? These issues apply to any person who 1) moves from one State to another, 2) leaves the United States to travel or work in another country, or 3) has different Benefits from one source of reimbursement for health services to another. All of these issues can complicate the resiliency continuum of health care as our society attempts to be adaptable to changing economic needs and local employment patterns. The Affordable Care Act of 2010 offers a solution for many persons who are unemployed. However, even the co-payments become prohibitive for any unpredictable access to Primary Healthcare.
STORY FIVE
Kathy and Dan had considered full retirement when they were both 67 years old. So far, they had 1) enjoyed good health, 2) were able to control their work level, and 3) planned to be actively involved in the needs of their grandchildren. Kathy worked for a small business as a bookkeeper, and Dan was self-employed by his own small, successful home remodeling business.
They were in good health. When they first qualified for Medicare, Kathy and Dan had converted their Medicare Part A and B coverage to a Medicare Advantage plan. This plan eliminated the need to purchase a Medicare Supplement health plan or a Part D plan for drug coverage. Kathy and Dan liked their Medicare HMO since it paid for a planned process of Routine Check-ups that are difficult to arrange under standard Medicare. The Primary Physician for Kathy and Dan had known them both for many years and participated in their Medicare HMO. The restrictions of the Medicare HMO were acceptable to their physician and the hospital they used.
But ten years later, Kathy and Dan faced a completely different life. Kathy has had a severe stroke and lives in a nursing home. Dan had to sell their home to pay for her nursing home costs. Once their assets were gone, her nursing home charges became the responsibility of their State’s Medicaid program. Dan has had a myocardial infarction, a “heart attack,” and soon needed a special pacemaker for his heart. The pacemaker implanted by his cardiologist may eventually need to be replaced, and one of his medications was recently recalled because of possible adverse effects that the pharmaceutical company did not identify until after it was originally approved for use. He currently takes 7 medications regularly. Kathy and Dan are fortunate because their children are attentive, and the Medicare Advantage Plan minimizes the direct costs to Kathy and Dan. Still, Dan wonders about finding a retirement facility rather than living in an apartment. Some retirement communities offer several levels of care. He would also be closer to his wife, Kathy. Within another 3 years, at about 80 years of age, Kathy and Dan have died after several hospital admissions from their declining functional resiliency.
COMMENT An analysis of Medicare total expenditures reveals that 1/3 of these expenditures are spent for healthcare that occurs during the last 12 months of a person’s life. The story of Dan and Kathy does not include their involvement in a continuing process of heroic intervention in the face of nearly certain impending death. Currently, the science of healthcare is unable to reliably assess the future resiliency of a person’s health over a period of time. There are no known, recognized, and validated means to assess whether or not further means of heroic healthcare will have any effect on longevity or quality of life. The ethical standards of beneficence, futility, and autonomy are very difficult to honor simultaneously.
Since the financial obligations associated with certain types of healthcare, such as artificial kidney dialysis, can be quite large, it is very difficult for a physician to appropriately balance the Common Good for all Medicare-eligible citizens with the legitimate needs of an individual person for the appropriate levels of their comfort and human dignity. Any restrictions on healthcare that might be considered should apply to all resident persons in order for them to become ethically offered healthcare that is fully supported by a physician without risking the appearance of abandoning beneficence. — 9 —
AVOIDING A THORN TREE
Promoting the availability of a trusting relationship with a Primary Physician for every resident person is no simple matter. It takes time and is encrusted with many instances of unintended cognitive dissonance. The expectations that are brought to healthcare by otherwise healthy resident persons are often difficult to reconcile with what is really knowable. To explain that the stethoscope, described initially in 1819, is still the most useful tool for evaluating pulmonary function is difficult to accept by most resident persons. But, with each encounter by mail, phone, or in the office, a caring relationship can be established that ultimately forms the basis for efficient and effective health care.
Occasionally, the occurrence of cognitive dissonance can be substantial. In spite of these events, each physician’s search for meaningful connections must persist as a basis to achieve a mutually affirmed caring relationship with each resident person. The Population Health of a pluralistic society, like our own, will not survive without it.