I’ve been responsible for three people as they approached the end of life. My mother, my husband, and now my mother-in-law. Each time, I learn new ways to help.
My mother died of Alzheimer’s Disease in an excellent nursing home in 2007. Decisions were easy. No hospitalization. Care for her tenderly and wait.
My husband Vic was diagnosed with incurable cancer in 2006. Oncology, that most heroic of medical disciplines, didn’t leave space for Hospice during treatment phase. Vic’s oncologist didn’t mention Hospice as a possibility until his last week of life. Looking back, I wish I’d known more and asked more questions.
I later learned there was a Palliative Care Program at Strong Hospital in Rochester where Vic was treated. It had been serving patients for many years, but no one mentioned it in the two years he was sick. I didn’t know enough to ask.
His symptoms demanded treatment that insurance classified as seeking a cure. In truth, it was clear from the start there would be no cure. For months his treatment was drugs used to reduce inflammation and swelling. We focused on symptom relief (palliative care) but didn’t have a clear plan or the expert advice we needed.
I think of the many times I called the hospital because of a breathing crisis or an erratic heartbeat. They always told me to take Vic to the nearest emergency room. I wish I’d known a better way.
I talked to social workers at the hospital and Vic had excellent support for symptom relief from our local internist, but a Palliative Care consultation would have helped us understand and discuss our options. It would have relieved the stress of making decisions we didn’t know how to make.
Without Palliative Care, well-meaning oncologists focused on one more experimental treatment until Vic said “No.” Experimental chemotherapies caused unnecessary suffering and no relief. We had hospice support Vic’s last three days. Too little. Much too late.
I became a Hospicare volunteer in 2009, a year after Vic’s death. From that vantage point, I knew what we missed by not having hospice palliative care support early on. In recent years, the Hospicare PATH Program became an option for patients and families. I’m amazed how few people know about it.
PATH stands for Palliative Approach to Health. It’s available for anyone facing end of life issues. PATH doesn’t provide hospice services or medical care, but it offers invaluable consultations and evaluations.
The PATH consent form says, “I understand that PATH is a supportive coaching program, not a medical care program.” A good coach would have made a world of difference.
My third example is my mother-in-law who turned 102 in January 2018. As I’ve said before, I learned that “til death do us part” included my partner’s mother. Forgetful, incontinent, and falling even with a walker, she was fearful and unsafe when left alone. A few years ago, I hired 24-hour-health aides in her apartment in McGraw House. I also had support from McGraw House’s social worker.
My mother-in-law’s health aides and I weren’t trained to make decisions when there was a crisis such as a hard fall or breathing trouble. The doctor’s office always recommended the ER. I’d been through that before with my husband. The ER wasn’t what anyone wanted. This time I sought better choices.
About six months ago, at my request, my mother-in-law’s doctor ordered a Palliative Care Consultation with Hospicare. I didn’t think she was ready for hospice service then, but I knew we could get helpful and wise advice from a Palliative Care Team. A huge weight of responsibility lifted from my shoulders knowing I had knowledgeable people to guide me and help me protect my mother-in-law during her last years.
You may not know about the PATH program. I didn’t, but it’s not complicated. Patients and caregivers need to know every option so they know what to suggest to their hurried and over-booked doctors. We need to know what PATH offers a patient and family before the patient needs to be actively on hospice.
Next month, I’ll share more of our experience on the PATH program and how much it helped when my mother-in-law became a hospice patient.
Bio: Elaine Mansfield’s book Leaning into Love: A Spiritual Journey through Grief won the 2015 Independent Publishers Book Award Gold Medal for Aging, Death, and Dying. Her TEDx talk is “Good Grief! What I Learned from Loss.” Elaine gives presentations and workshops and has been a Hospicare volunteer since 2009 in a variety of roles. She and writes https://elainemansfield.com/blog/ at her website https://elainemansfield.com.