The soft sounds of her breathing measured the slowing moments of Carol’s last six days of life. Friends, neighbors and fellow church members exchanged greetings and updates on their way to and from vigils at her bedside. Carol drifted in and out of a mystic reverie, awakening only momentarily for a brief conversation before gradually slipping back into twilight.
Friends touched her gently, talked about consequential and inconsequential matters, prayed with her, combed her hair, covered her up, read to her—or just sat still. As her words dissolved into fuzzy mumblings, their meaning no longer important, her protectors became proxies for Carol’s end-of-life wishes.
Though friends tried to help the doctors and nurses understand her wants and needs, a few times communication broke down. When she was thirsty, her friends gave her water in defiance of a doctor’s order. Shortly after she was transferred to a nursing facility, a friend was late for her visit and found Carol alone and forgotten behind a pulled curtain, her face wizened with pain and a guttural moan accompanying each breath. When the friend approached a nurse who was chatting with a fellow worker and asked for pain medication, instead of making suffering a top priority, the reluctant woman slowly finished talking and then brought relief. Once Carol was medicated, she returned to her rhythmic breathing. If she had not had devoted supporters, how many other wishes would have been neglected?
In 1990, Congress enacted the Federal Patient Self-Determination Act. In response, California ethics committees and state legislators developed advance directives. Like an à la carte checklist, the directive forms allow the public to name an agent or two to act on their behalf should they become incapacitated. The agent can make all health care decisions, including decisions to provide, withhold or withdraw artificial nutrition and hydration and all other forms of health care. (This is separate and distinct from Death with Dignity, a new California law allowing the terminally ill to end their lives through doctor-assisted suicide.)
Yet problems arise because the directive is not legally binding. When the end of life becomes imminent, doctors are often the ones who introduce the discussion. Patients must quickly learn a massive new lexicon: terminal illness, living will, advance directive, compassionate care, comfort care, true wishes, palliative care, code blue, no code, no C.P.R., do not resuscitate, do not intubate, chemical code, slow code, etc. Even after Congress passed the self-determination act to facilitate communication between physicians and patients, the medical profession remains unable to distinguish between those terms themselves, so communication frequently breaks down. Disagreements between health care professionals occur outside hospice patients’ homes or hospital rooms, and nurses, who are most likely to be present at the moment of death, struggle with internal cultural and ethical decisions. As a result, the fulfillment of end-of-life wishes is not always guaranteed.
In 2014, with the hope of improving communications by reimbursing physicians through Medicare for the end-of-life discussion, the American Medical Association released procedural terminology codes to bill for the time spent. Medicare still has not approved the reimbursement.
Susan Deixler, a care manager at West Marin Senior Services, said there are two main hospice services in West Marin: Hospice of Petaluma and Hospice by the Bay. “The larger ones [like Hospice by the Bay] are run by corporations and have more money, but you lose the sense of heimish. All the nurses are wonderful, but in a larger corporate atmosphere, patients’ wishes can get lost.” A call for a response from Hospice by the Bay was not returned.
Ms. Deixler emphasized, “Friends and family make such a big difference. If family can’t be there, we find volunteers to be there, we are there ourselves, or we work with the facility or hospice to improve patient care. It’s so heartbreaking when you go into those situations and you see someone not being attended to. Hospitals are understaffed—and there you go.”
Cynthia Clarkson is a nurse who has worked with Hospice of Petaluma for 15 years. She said most patients experience a calm, comfortable death, getting the care they need from the hospice. “We listen to them, help them finish up old business, like coming to terms with an estranged child. We offer comfort, medication, talking and singing. We provide nurses, social workers, chaplains and doctors,” she said.
Ms. Clarkson described one case that she said will stay with her forever. Marian (not her real name) suffered from Lou Gehrig’s disease and it was clear to everyone but Marian that she was dying. She fought until the end—even after hospice took over. “The disconnect was hard on her family and friends as they continued to visit and help her in any way they could,” she said. Although Ms. Clarkson had posted signs on the telephones in Marian’s home to call hospice and not 911, Marian insisted her home-care worker get an ambulance when her breathing became too difficult.
“I understood,” Ms. Clarkson recalled. “I met her and her daughter at the hospital in the middle of the night. Hours went by. At one point, her daughter was overtaken by sleepiness. I assured her that it was okay to leave for a while because some patients just don’t want to die when family members are present. Some need to die on their own terms.
“As her daughter napped, I watched Marian sleep until one moment, when she looked up at me and mouthed, ‘I love you,’” Ms. Clarkson said softly. “Her death was not painful, not labored; she just stopped breathing. Although I remember every patient I help, Marian will always occupy a special place in my heart.”
An advance directive form can be found at http://ag.ca.gov/consumers/pdf/ProbateCodeAdvancedHealthCareDirectiveForm-fillable.pdf.
Peggy Day is a retired nurse who worked in emergency rooms where people died so suddenly there were often no plans. She lives in Point Reyes Station.