Six months before my sister died, she agreed to record her thoughts as her health dwindled and ended. I wish I could play them for you, but what she says is opposite the massively expensive investments we’re making in End of Life and chronically ill (Palliative) care. Do we health practitioners really have the courage to tell a person on dialysis that they’ve been given a gift of a peaceful, fade-away death? Does the person with chronic pain really want to know that the honest, compassionate presence of someone being with them–sitting, not speaking– may just be what the doctor didn’t order but should, and that this worked to alleviate their pain the most? Would her world-renowned surgeon in Boston want to know that after he practically gutted her and after giving her a survival of two months, that she went to a medical doctor in Katmandu, Nepal who put her on a program of organic vegetable broth, massage, meditation and a flower extract, that her stage four Liposarcoma went from an eight-pound tumor to the size of a grape? While being treated, she recorded about the suffering of the Hindus, the poverty and disease and the heart-opening beauty of the staff. She loved the mountains and the clean air and got used to the concept of the suffering and beauty of every being, every thing.
Fourteen years later she felt a new lump, and, not having the money ($125.00 a day plus the $5,000.00 airfare) to return for three months to Nepal, she waited too long. When she finally made the arduous journey, the dear doctor thought he wouldn’t be able to save her. But she knew that they would surround her with honest love, kindness and true teary-eyed compassion. She was there for three months then chose to return home to die.
A fastidious Virgo, she always looked perfect, fit, and had one glamourous item on her at all times. While living within a wonderful residential hospice in Massachusetts, her dear friend made sure she had a mani-pedi every week and that her hair color was perfect right through her death. And he made her laugh.
One study in 2014, found that people typically moved from one care setting to another three times in the last 90 days of life, with 14 percent of them facing a move in the last three days.
This is unacceptable and inhumane. Let’s try a practice based not on chasing time, but chasing a time of reveling in the acts we love.