No Place For Quitters on the Care Team

Don’t quit on my client.

It may be emotionally healthy for a patient or the patient’s family to accept the diagnosis of a life-altering chronic disease. But from my perspective as a patient advocate, it is never healthy for a doctor to tell a patient to just accept debilitating symptoms of the disease without offering possible solutions. In fact, doing so is dismissive, disrespectful and disheartening.

An octogenarian client of mine is a creative, talented person who still has projects on his “to-do” list. He prefers a walker to a wheelchair, and does not like tremors or other symptoms to get in the way of his daily activities. The specialist he sees started to respond with a version of, “That’s the disease. What did you expect?” The suggestion that the frail patient do the physical therapy exercises on his own was not helpful. Time for fresh ideas from a different doctor. I told my client and his family member that they have the option of switching specialists.

Quality of life is everything. Patients, at any age or stage of chronic disease, have the right to let their doctors and other care team members know what is important to them.

My client and I would have preferred that the original doctor listened to him and at least try to think of a suggestion or two on how to mitigate the day-to-day frustrations. Simply recommending that he see a palliative care practitioner would have been appreciated as evidence of compassion. Perhaps an upcoming appointment with a different doctor will be more productive.

Health care providers have the duty to listen, learn the patient’s values and offer solutions, which may include expanding the care team.

Another type of quitting on the patient is to decide that if the individual did not fully engage with some type of rehabilitative therapy previously, it is not worth another attempt. The standard advice for getting a child to eat vegetables applies here. Offer these healthy foods, and if they are not accepted the first time, wait a couple of weeks and try again. A client who lost his speech after a stroke is in a long-term skilled nursing facility. Speech therapists at a previous facility had stopped teaching him to work with a communication board, which allows an individual to express needs and thoughts by pointing to pictures, because he did not engage. Is it ever good care to decide not to work on giving the patient some form of communication? In my opinion, care providers must learn how to connect with and motivate an individual to maintain as much quality of life as possible.

Quality of life is everything. Patients, at any age or stage of chronic disease, have the right to let their doctors and other care team members know what is important to them. Health care providers have the duty to listen, learn the patient’s values and offer solutions, which may include expanding the care team.

Sometimes it is easier to have someone else step up and not take “No” for an answer when the patient’s needs and wants are reasonable and potentially helpful. A patient advocate can reduce the stress of patients and loved ones by speaking up for them. Whomever speaks for the patient, no medical facility or health plan should ignore the voice.

Roseanne Geisel is the founder of Geisel Advocacy for Patients LLC