Both participants and caregivers in long-term care programs face a myriad of difficulties. Participants with long-term services and supports needs often have many health issues, meaning they are in constant transition between care environments and providers with their needs ever-evolving. As a result of visits to a number of doctors on a regular basis and the number of providers who support them, the participant’s information lives in multiple locations. This can lead to discrepancies between providers and the participant having to constantly provide the same information.
Caregivers, especially family members, are also facing great challenges. It’s a full-time job to care for someone in the home – it takes nearly 40 hours a week – and searching for a trusted service provider to take over can be another job in and of itself.
The root of the problem is that many long-term care programs are focused on the providers and not necessarily the people – those receiving the services and those providing them. Often, no one has the full picture of the participant’s health, which can lead to suboptimal care. An ideal situation is for everyone involved with the participant to be up-to-date and have a full-picture of their health and well-being at all times. When they are, services can be administered effectively with less risk for everyone involved.
Today would have been easier if I did not give a damn. Easier if patients were clients. Easier if medical advice was causal suggestion. Easier if I believed that patients were solely responsible for their health. Easier if suffering was not real. Much easier, if I did not care.
However, despite the popular movement from “the doctor knows best” towards shared decision-making, I feel responsible for my patients. What happens to them is very important to me. I mean this not as an objective definition of a doctors “job.” I am talking about the personal love of a caregiver for his community. Therefore, while I respect the freedom of each patient to control their own future, sometimes when they exercise that right it hurts.
First, there was my patient who received multi-agent complex chemotherapy and then vanished for three weeks. Despite severe mouth sores, fevers, rapid weight loss, numbness of his feet and daily vomiting, he did not call. He had attended chemo class, had received written instructions, and had at least six emergency phone numbers (and my email). Nonetheless, he did not reach out. On one occasion, one of my staff even spoke to him by phone and he did not mention the disaster. He just suffered and deteriorated. Now, I need to stop his treatment and can only try to salvage what remains of his frail health.
I can’t tell you exactly when it happened, but sometime in the past two decades, the practice of medicine was insidiously morphed into the delivery of health care. If you aren’t sure of the difference between the two, then “God’s Hotel” is the book for you. It’s an engaging book that chronicles this fin-de-siecle phenomenon from the perspective of San Francisco’s Laguna Honda Hospital, the last almshouse in the United States.
Dr. Victoria Sweet, a general internist, came to Laguna Honda for a two-month stint more than 20 years ago and ended up staying. Laguna Honda was home to the patients who had nowhere else to go, who were too sick, too poor, too disenfranchised to make it on their own. The vast open wards housed more than a thousand patients, some for years. Laguna Honda was off the grid, and this, Sweet discovered, was to the benefit of the patients.
Unencumbered by HMOs and insurance companies, the doctors and nurses practiced a very old-fashioned type of medicine, “slow medicine,” as Sweet terms it. There was ample time for doctors and nurses to get to know their patients, and ample time for patients to convalesce. Many a written-off patient recovered within the comforting, unhurried arms of Laguna Honda.