Last month, my mother called to report my 90-year-old hanai Auntie Mae passed away in a Seattle emergency room. She introduced my parents to each other 67 years ago. I was surprised to hear of her death, though I knew she suffered from heart disease.
Last month, my mother called to report my 90-year-old hanai Auntie Mae passed away in a Seattle emergency room. She introduced my parents to each other 67 years ago. I was surprised to hear of her death, though I knew she suffered from heart disease.
Auntie Mae enjoyed her last 15 years of life. She shared a house with her two daughters and had fun times with her grandchildren and great-grandchildren. She took trips to local Washington casinos and made multiple excursions to Las Vegas. I was happy she enjoyed herself during this time but deeply saddened about the way she spent her last three months.
Auntie Mae had heart disease. Last year, she became fatigued with normal activities such as climbing a small flight of stairs at home. I am not a doctor, but based on what I know from a project to improve heart care, it appeared she had Class IV heart failure, qualifying her for palliative or hospice services. On Christmas Day, she had shortness of breath and went to the emergency room. In the next three months, she was in and out of the ER six times. In February, she was hospitalized after experiencing unbearable leg pain. Her doctor found a life-threatening blood clot and ordered amputation of her leg. Following the amputation, she went to a skilled nursing home where she was confined to a bed in a four-person room.
After a week at the nursing home, she saw her cardiologist. The cardiologist discovered a blood clot in her other leg and sent her to the ER for a second amputation. She arrived screaming and pleading not to go. She suffered a heart attack and died upon admission.
The cost of ER visits, hospitalizations and nursing home care was unnecessarily high. But the real tragedy was how a 90-year-old woman whose condition was irreversible and declining spent the final days of her life in fear and suffering. It was sad she could not see her great-grandchildren and grandchildren. It was tragic she couldn’t cuddle with her beloved poodle. Regrettably, she couldn’t spend more time with my mom to reminisce about the good old days.
Seattle prides itself on being among the best centers of medical treatment in the world, yet the system failed Auntie Mae. Did Auntie Mae and her daughters understand her prognosis? Did her primary care physician give her a care plan and monitor it? Was there any communication between the PCP and the cardiologist? Did the ER doctors or the hospitalists share information with her PCP? Did anyone talk to Auntie Mae about palliative care or hospice? Did anyone chat with her about her Five Wishes (an Aging with Dignity program)?
As East Hawaii Independent Physicians Association administrator, I discovered it is often difficult for physicians to have heart-to-heart talks with patients about dying. Physicians have been taught to diagnose and treat—not discuss end-of-life planning. Many deeply empathize with their patients and want to give them hope.
Their compensation system, which forces them to see as many patients as possible daily, does not allow time and energy to have meaningful conversations to discuss prognoses and choices. PCPs no longer see their patients in the hospital, so information about patients’ conditions is sometimes lost.
We cannot choose the date and time of our death. Until then, we should think of every moment as a gift. Unlike money, time once spent can never be replaced. Much of Auntie Mae’s last months were spent in surgery or the ER when she should have been surrounded by loved ones in relative comfort. As a community, we need to think about how to maximize the quality of those precious final months of life. By educating ourselves, understanding our choices and communicating our wishes we can prevent more people from suffering like Auntie Mae.
Community First is encouraging conversations regarding end-of-life care planning. We can reduce stress and conflict for our loved ones and gain more control over our own comfort at the end of life by having these conversations, asking medical providers to help us understand our choices and taking advantage of support provided by Hospice of Hilo and other local community organizations.
Susan Mochizuki, MBA, LNHA, is administrator of the East Hawaii Independent Physicians Association and Hospice of Hilo board member.
This column was prepared by Community First, a nonprofit organization led by KTA’s Barry Taniguchi, and supported by a volunteer board of local community leaders. Community First was established in 2014 to help the community respond to the health care cost crisis and support initiatives that change health care from just treating disease to caring for health. To learn more about Community First, visit CommunityFirstHawaii.org.