My previous column focused on Dr. Atul Gawende’s book, “Being Mortal: Medicine and What Matters in the End,” and his important message on end-of-life issues.
“All we ask is to be allowed to remain the writers of our own stories,” Gawende said, echoing every human’s hope.
Throughout the book he also wrote about hospice and its goal to give dignity and meaning to terminally ill patients.
Dr. Gawende tells one woman’s story. He was in the room with the patient and a hospice nurse for their initial meeting. She asked about the woman’s history and health status, including her level of pain, measuring her mental, physical and emotional condition.
The patient was suffering greatly, and when asked why she had chosen hospice care, she said, “The lung doctor and heart doctor said they couldn’t help me anymore.”
After the discussion ended, the doctor spoke with the nurse. Gawende didn’t understand. Wasn’t the goal of hospice to let nature take its course? he asked.
“That’s not the goal,” the nurse said. “The difference between standard medical care and hospice is not the difference between treating and doing nothing. The difference is in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now — by performing surgery, providing chemotherapy, putting you in intensive care — for the chance of gaining time later.
“Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family now and then, not on whether (her) life would be longer or shorter.”
Nonetheless, when the patient was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. However, “with the supportive hospice therapy she received, she had already lived for a year.”
I have known people who’ve been placed in hospice care, then released from it, gone back later and then released again. No one plan works for all patients. My in-laws were hospice patients for only eight days each, but I felt such relief when hospice came in — for myself and for them. They were treated so compassionately that I became a fan for life.
There are several hospice facilities in the Lodi area, but because I worked with Hospice of San Joaquin, I’ll be using information from them.
Here is their mission statement: “The Mission of HSJ, a not-for-profit organization, is to provide comprehensive and compassionate medical care, counseling and support to terminally ill patients and their families, regardless of ability to pay, and to educate and collaborate with health care providers and the public in promoting quality end-of-life care.”
They provide visits to a person’s home or facility, give emotional and spiritual support, and also offer respite care for family and caregivers.
They help make a plan of action to achieve goals, using a team-oriented approach.
“At its very center,” hospice says, “is a belief we each have the right to live pain-free until the last day of our life, with our families receiving the necessary support allowing us to do so.”
Primary care physicians work with hospice to establish eligibility, then their staff members begin their work. Aside from the previously mentioned team, there is an on-call nurse, 24 hours a day, medications for pain and symptom management, medical equipment and supplies, counseling, respite care, and then grief support.
Their services are never billed to the patient or family, regardless of their insurance status.
HSJ also has a program called “Transitions” for people who are diagnosed with advancing chronic or life-limiting illness who are pursuing curative or palliative treatment and/or are not yet ready to make a decision for hospice care.
Transitions offers companionship and socialization for the patient and family, help in understanding the disease, and assistance with everyday life needs, such as errands, household organization, even pet companionship.
“Life-altering diagnoses often leave a person with more questions than answers,” the HSJ points out.
Isn’t it wonderful to know there are people with answers for you during perhaps the most challenging time of your life?
For me, that knowledge would remove fear and uncertainty when I most want peace of mind. It’ll be my first choice when my time comes, because I already know the answers to my questions.
If you’re curious, the answers are there for you, too.
Susan Crosby is a Lodi author and a member of the Lodi Senior Citizens Commission.