The integral role of primary care in end-of-life care

There is increasing public and medical interest in improving end-of-life care. The books “Being Mortal” and “When Breath Becomes Air” about end-of-life sustain their bestsellers' position. The Institute of Medicine suggests that physicians be compensated for their time to fully discuss these issues. Medicare and Medicaid will compensate doctors for the time that it takes to have these critical consultations; although the compensation is often not commensurate with the extended time it takes to fully mine into the complex issues that lead to a shared decision about the best care.

When it comes to end-of-life issues across all ages, the primary care physician(s) who know the family best should have an integral role in the formal bedside decision-making process. Furthermore, primary care physicians should be compensated for the time it takes at the bedside to assist in directing the best care for these patients.

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In the acute hospital setting, end-of-life decisions are frequently made with less than adequate information. When ought a vulnerable, extremely premature newborn with multiple developmental challenges be given comfort care over aggressive interventions? When is it time that a patient following multiple admissions with advanced COPD, heart failure and senescence be directed to palliative care. Most importantly, how can the critical information be made available within the time frame limited by virtue of the rapidly changing clinical states.

Sophisticated technology and therapies require the presence of highly skilled, hospital–based physicians, who cannot be expected to know the patients as well as their primary care physicians. Yet, the best care depends not only upon rapid diagnosis and treatment, but on the prognosis and quality of life as well. In the vulnerable newborn, the quality of life factors are inextricably related to the needs of the family even more so than at the end of life.

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Moreover, insurance companies’ and hospital protocols are structured so that primary care physicians are not only not compensated but lack the authority to fully participate in championing the patients and family’s wishes.

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Considering these latter factors, what resources are available that would result in the best outcomes? Historically, the primary care physicians were the architects of shared decision making. Although their presence would contribute vital, relevant information, attitudes and insights that exist nowhere else, rarely are they present at the bedside; even when such decisions have profound effects on the future of the patient and families.

Two cases will demonstrate the problems:

Case 1

A 48-year-old woman gives birth to an extremely premature infant, her third child. She conceived using IV fertilization, her husband contributing the sperm, a young donor the ovum. One of her two children from a previous marriage was severely developmentally challenged. Her only healthy child died in an auto accident. These tragic factors openly led to the dissolution of her first marriage.

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Twenty years later, she has married the man of her dreams. Her husband, an engineer, has no previous children and is delighted to finally become a father.

She has had the same OB/GYN and pediatric doctors with all of her children. The obstetrician knows the entire family history, including that of her new husband garnered during the pre-natal visits. This has been a difficult pregnancy. The pediatrician knows the mother extremely well and has been there for her throughout all the most difficult times. During pre-natal visits, both physicians have discussed the possible uncertainties, particularly in light of the mother’s age. Through these conversations doctors understood the values and the goals of care of the parents—including the unexpressed ambiguities and concerns of the couple.

The exact age of the newborn boy is uncertain; around 22 weeks. Considering a two-week range on either side, this would result in a 20- to 24-week range of maturity. Therefore, there is a wide variation in prognosis for survival.

Discussion

Should care be aggressive or conservative? The parents are confused and frozen with grief. The mother is torn: she does not want the burden of a severely challenged child with possible life-long severe impediments for a second time. Yet, she knows how much her husband has wanted a child. The husband is most empathetic toward his wife, yet conflicted.

The caring hospitalists contribute their statistical knowledge for potential survival. These doctors often lean toward high-tech treatments because moving to palliative care negates any likelihood of the infant having any life at all. If the child survives there may well be serious life–long problems.

Where is dispositive information to be found? Who can best direct the couple in their decision making? It is in this context that the presence of the wife’s OB/GYN and pediatrician is most essential and helpful. The doctors know the family needs, the character, the conflicts and the values, all of which together can lead to the best outcome in this tragic situation.

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While further insight and understanding may be forthcoming from pastoral care and biomedical ethics consultation, in most cases only the primary care physician possesses the critical knowledge that can best control the direction of care. She can help reduce the burden of guilt for the parents, support the critical care team, reduce staff burnout and better prepare the family for anticipatory grief.

Case 2

This was the fifth admission of an 84-year-old male for advanced emphysema, heart failure and acute pneumonia. Prior admission four weeks earlier required an eight-day period of ventilator support. He has become increasingly inactive, unable to pursue his golf or walks, and is extremely forgetful. He is oxygen dependent and has periods of severe shortness of breath unrelieved by therapy. His wife of 55 years, the lone caretaker, has advanced arthritis and osteoporosis with chronic pain. Their primary care physician has known the entire family for more than 30 years.

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The patient’s condition on the ventilator showed little improvement. The prognosis was uncertain after 10 days on assisted ventilation. A living will was vague as to when a transition from aggressive to palliative should occur. The patient has designated both children to be surrogate decision makers. There are no Practitioner Orders for Life Sustaining Treatment. Decisions about further care include a possible tracheotomy and permanent feeding tube inserted through the abdomen.

On a recent house call, the primary care physician had noted a subtle but unspoken change in the wife’s response to her husband’s illness; there was fatigue, a feeling of “not again, how long will this go on?” Yet she continued to claim that she alone could care for her husband. She stated that she wanted more time to determine her husband’s outcome. The children were on opposite sides of the care question: the son wanted to continue aggressive care, the daughter to switch to comfort care.

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Heretofore, the primary care physician had not been directly involved in discussions of care. The wife could not make the decision due to feelings of guilt, life-long dedication and her role as caretaker. In truth, she wanted her daughter to decide. Shortly thereafter, the primary care physician’s presence at the bedside created the vehicle for communicating the wife’s changed goals for her husband. The doctor could share this with the son, as well as advising the about hospitalist about the best goals of care.

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Through the physician’s profound understanding of the relationships within the family she could resolve the dilemma, and assuage the guilt and ambiguity among all involved.

They agreed that palliative care should be the goal.

Discussion

As stated above, the best decisions are made in a shared decision making model. In this model there are mutual rights and responsibilities. Yet these decisions are fraught with uncertainty and ambiguity and differences of opinion about care.

Despite efforts to anticipate problems such as the need for invasive life-extending therapies, the human expectations of a cure frequently trump the reality of possible death or profound lifelong disability.

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The primary care physician presence brings insight, as well as the narrative, to the patient’s story that results from the lasting relationship.  This includes the body language, the tone of voice and the discourse that creates what psychiatrist Theodor Reik described as “listening with the third ear.”
The importance of conversation has been marginalized by overdependence on electronic communication. On the other hand, using electronics such as Skype to facilitate communication can make significant contributions to the shared decision making process.

Primary care physicians are stressed due to administrative overload and financial challenges. One ought not to expect them to contribute the extended time it takes to arrive at the best care without being justly compensated for their time and sage counsel.

It is imperative that insurance companies and hospitals compensate primary care physicians for the extended time necessary to direct patient care both toward cure and compassionate care. The Medical Society of New Jersey, for one, is deeply concerned about when primary care doctors have the right to attend hospital care in cooperation with the input of hospitalists.

Medicine remains a calling built upon trust. An age-old wisdom teaches that the secret of caring is in the caring of the patient. This includes the responsibility and the right of the primary care physician to be present in these crucial and agonizing moments. It is the task of all within the profession to reaffirm the sacredness of the physician-patient relationship and so to shape policies, practices and compensation around this fundamental reality.

Joseph Fennelly, MD, chairs the bioethics committee of the Medical Society of New Jersey.