There are two health topics near and dear to me. The first is patient education. The second is palliative care. The first focuses on quality of life, while the second addresses quality of death.
If you have never been involved in the healthcare decisions of an older family member, I suggest that you should, for two reasons. First, the relative probably needs the help, and second, because you want to understand what you’re up against before reaching the age where you must face it yourself.
I use my 90-year-old Nana as the model for what’s wrong with healthcare. I don’t think that a week goes by where she’s not worried or confused by something that the doctor has told her. Her questions are not complicated ones, but they do require someone to explain them to her.
Last week she went to pick up one of her prescriptions at the pharmacy, one that had been newly reissued by her doctor. Evidently in an effort to save her money, he switched her prescription from a 100 mg tablet twice a day, to a single 200 mg tablet taken just once. But he never told her this before calling in the prescription. Certain that her pharmacist had made a mistake, and spent a long night awake and worrying (and not taking her medication!) before being able to get through to her doctor’s office the following morning.
Adding to the chaos, the visiting nurse came to her assisted living facility at breakfast that morning, and noticed that my Nana’s blood pressure was unusually elevated; the change was due to stress, but Nana couldn’t remember what her blood pressure had been the day before. All of this could have been avoided by giving her a simple printout (large print for readability, please!) that would recap the visit and answer any questions that she might have at home.
For patients, like my Nana, with chronic medical issues (pre-diabetes, congestive heart failure), so many questions could be answered with a simple handout. For the diabetes, what is a normal blood glucose level? When is she supposed to test her blood sugar? If it’s high, what number warrants a lifestyle change and what number warrants a call to the doctor? For the congestive heart failure, simple reminders to keep her feet elevated and eat a banana to counteract the potassium loss caused by her Lasix would be beneficial, and would improve her quality of life. Telemedicine systems like the Health Buddy from Bosch make a considerable impact in the lives of patients.
But what about quality of death? The recent death of Farrah Fawcett (overshadowed as it was by the death of Michael Jackson) offered a reminder about the importance of palliative care when death becomes an inevitability. There has been condemnation of the fact that she put such personal details of her life on display, but in many ways she was speaking for everyone with terminal illness. We put so much effort into fighting the good fight and keeping patients alive that we don’t give the proper attention to how to make their final days, weeks or months as comfortable and as dignified as possible.
I lived through this with my other grandmother. She had been strong as an ox for 86 years, but in the final two years of her life her body just shut down, one system at a time. None of her doctors wanted to discuss the end. Each suggested that it wasn’t his specialty — cardiology, GI, nephrology, neurology — that was going to do her in, so therefore each absolved himself from the responsibility of making that final call, enabling her to qualify for hospice care. For two years, in spite of how obviously she was suffering, each specialist pushed ahead with treatments designed to prolong, but not improve her life.
On behalf of these two women, both of whom I loved very much, I remain committed to improving both quality of life and quality of death for all patients, and continue to seek clients who also work towards these goals.