A Patient, Minimally Disruptive Medicine, and a Palliative Care Program

Submitted by Paige Organick, Nataly  Espinoza Suarez, M.D., Anjali Thota and Bjorg Thorsteinsdottir, M.D.

An 84 year old woman, whom I will call Amy, went to the hospital 4 years ago to receive a pacemaker. The surgeons botched the surgery, and subsequently told her she’d have, at most, 2 years to live. Four years and many procedures, interventions, and subsequent infections later she is still going strong. She carries a bag for her PIC line and cares for her husband, who is 94% blind, on dialysis, has had cancer, and is recovering from leg surgery. Amy and her husband live alone in their own home. If there ever was a couple in need of minimally disruptive medicine (MDM) to decrease their treatment burden, it is this couple.

After the prolonged hospitalization, Amy was dependent on a high risk heart medication that kept her hooked up to a cardiac monitor and essentially confined to her hospital room. Fortunately, she was invited to participate in the Palliative Homebound Program of the Care Transitions team at the Mayo Clinic. The multi-disciplinary team works on the Palliative Care homebound program; in theory, they assist seniors over the age of 60 with high risk medical conditions transitioning in and out of the hospital, focusing on palliative care and in-life transitions. But it seems they do much more than that, working on fall prevention, simplifying medications, and coordinating with nursing home staff, social workers and physicians to best aid the patient in their own home. Dr. Thorsteinsdottir and a Nurse Practitioner regularly visit Amy and her husband in their own home, and in return they freely call her personal cell phone whenever they have even the smallest question.

The team freely uses the basic concepts of MDM and the accompanying theories, even though they never call it by name. They acknowledge that imbalances occur between the patient’s capacity to perform cognitive and physical actions and the workload they were assigned by their various clinicians. This imbalance causes a burden of treatment, meaning that the patient feels overwhelmed, saddled with or stressed over some aspect of their therapeutic treatment. The Care Transitions team seeks to right this imbalance of overwork on the patient’s behalf. Nurses call regularly to assess coping, ongoing need and co-ordination of necessary appointments. Dr. T and Nurse practitioners come to Amy’s home to visit with the couple, relieving much of the burden of dealing with multiple appointments. Advice from subspecialty physicians is mostly sought via clinician to clinician phone calls. This means that, to get the most care, Amy didn’t have to navigate busy downtown Rochester, deal with finding parking, then walk the long distance up the ramp and into the clinic, which she said made her too tired.

Having Dr. T come to her home made care not only easier, but also more effective. It helps Dr. T and the nurses see the home environment and identify fall risks and other hazards, and better get to know and understand the patients on their own terms. This creates holistic care where clinicians better understand their patients, their values, and how to create medical values that align with that of their clinicians. A big focus of MDM, and the Care Team, is to understanding the patient’s needs and values. For example, some may not mind getting up early in the morning to drive their spouse to dialysis; Amy can’t stand it. No matter what, this is a burden of treatment for the couple. However, Dr. T and the Care Team understands the couple well enough to figure out an alternate bus Amy’s husband can take so Amy doesn’t have to wake up so early, decreasing  Amy’s burden of her husband’s treatment, making her more happy, free, and less tired.

The Care Transitions team implicitly practices MDM, looking to simplify medical care for their patients. This indicates that the concept of MDM could be more widespread than previously believed, making it challenging to track and accurately assess how many care teams use MDM. This creates wide implications for how researchers ought to understand and track the spread of MDM. Knowledge of the term does not indicate use of the theories and philosophies behind it, and thus cannot be the sole way researchers look for other clinics using MDM, form collaborations, and provide resources for “MDM” clinics.

 

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