The bride could blink, and that was all.
The groom, her longtime boyfriend, sang her a love song, and then they married. Gathered around her in the nursing home, her loved ones cried, joy mingling with their grief.
Sometime later, even the ability to blink was gone. So was the ability to breathe. Machines kept her alive. Tubes kept her fed.
Within, her mind might have been alert. No one knew for sure. But her body, stilled by the cruelty of Lou Gehrig’s disease or ALS, no longer worked.
Once again the loved ones gathered. It was time to say the goodbyes that all believed she wanted. The machines stopped. Without them, in a room filled with tenderness and tears, she drew her last breath.
Dick Sayre, a Spokane attorney, told this story to illustrate how law and medicine can help people find human warmth, even in the valley of the shadow of death.
For all of its marvelous power to heal, Sayre said, modern medicine is growing more aware of its limits, more respectful of patients’ wishes, more sensitive to the management of pain, more willing to recognize the moment when medical technology is about to cross the bridge from hope to futility.
But who decides when that moment has arrived? And who decides what to do about it? Some people want intensive care, with heroic interventions by surgeons and machines, right up to the last heartbeat. Others don’t.
Sayre specializes in elder law, estate planning and the directives people can use to ensure that health care providers implement their values – whatever those values might be.
Sayre, and other specialists consulted by The Spokesman-Review, said the worst outcomes occur when no medical directives exist and families do not agree.
In the absence of a valid health care directive or a durable health care power of attorney, a patient’s spouse may be asked to decide what medical technology should do. But an unmarried partner, regardless of the relationship’s length, will have no voice. In the absence of a spouse, children can decide but only if they unanimously agree. Next in line, parents can decide.
“The bad stuff happens when people don’t plan,” Sayre said. “When you’re dying and there’s no one around who knows what to do. Or when kids who are estranged and have guilt issues say ‘We don’t want mom to die, we love mom.’ They fight to keep mom alive when mom’s body is trying to die. Sometimes we go to court to get a decision. The court will try to enforce the wishes of the dying person.”
These scenarios, Sayre said, often motivate his clients to complete the legal documents that can designate a decision maker they trust, and can tell physicians what care they do and do not want.
Do-it-yourself documents downloaded off the Internet, Sayre warned, do not always work; that’s because medical directive laws differ from one state to another.
There are other reasons for people to figure out their wishes and write them down in a legal directive.
“It’s a huge gift for your family,” said Katie Schatz. Otherwise, loved ones already crushed by a sudden crisis may find, added to their shoulders, the agony of a fateful guess. Schatz works at bedsides where families face this burden. She is an advanced registered nurse practitioner, clinical manager for the supportive care team at Providence Sacred Heart Medical Center in Spokane.
Sayre praises Sacred Heart for its efforts to consider the wishes of patients: “They have thorough protocols,” Sayre said. “They help families with decision making. They’ll bring in whatever faith tradition you need.” In his experience, Sayre said, the Roman Catholic reverence for life includes respect for patients’ wishes during life’s last journey.
Dr. Lisa Stiller leads the hospital’s effort. A physician, board certified in palliative and hospice care, she is medical director of the supportive care team. This team does more than comfort people who are dying. It comforts people who will recover. It brings a multidisciplinary group to assist patients of all ages who are grappling with serious pain and the other traumas of hospitalization. Members include chaplains, social workers, physical therapists, speech therapists, a music therapist, physicians and nurses.
“There is a time for technology and a time for doing everything we can to prolong life and give people a chance to get better,” Stiller said. “Also there is a time to focus on whether that technology is going to be helpful. And giving that person a life that has quality and comfort in the way they define. We help people and their families. We help the whole family. We talk through what they are facing and what’s important to them.”
“We assess suffering,” she said. “There’s physical suffering. Also emotional, spiritual, social suffering. They all can be mixed together. We pay attention to the whole person as we look at how they are coping.”
In 2010, the New England Journal of Medicine reported on a research project in Massachusetts, which found that lung cancer patients who received palliative care lived longer, needed less chemotherapy and rated their quality of life significantly higher. This opened doors to palliative care, Stiller said, at hospitals everywhere.
When the palliative care discussion turns to spiritual issues, hospital chaplains are not allowed, by their code of ethics, to proselytize. Providence has chaplains representing several faiths. The obligation all of them share, Stiller said, is to listen, respect and comfort.
Today’s physicians, Stiller said, likewise welcome conversations to define a patient’s wishes.
“We actually deal with physicians who are in moral distress because families want everything done,” said Schatz, even when additional procedures are futile. These doctors are asking, “Is it ethical to keep doing everything medical technology can do?”
“Doctors want to fix people,” Stiller said. “And we have a culture where we want to get fixed. We want to get better. It’s good to fight. It’s good to be cured. But what’s evolving in medicine is what if it’s not working as well. There comes a time when we’re not fixable. We’re just patchable.”
So is it possible for people to decline some of the things technology can do?
“Yes,” said Stiller. “You can say, ‘No thanks.’ That’s where medicine is evolving. To where you can have the conversation.”
To help patients and their families have these conversations, before a crisis strikes if possible, Providence encourages the use of the “Five Wishes” booklet, which enables people to write down their preferences on a signed and notarized statement.
Dr. Bob Bray, medical director at Hospice of Spokane, said it’s not as hard for people to outline their preferences as they might think: “People actually do know what they want to do.” What’s needed, he said, is “having the opportunity to talk out their thoughts: Who do I want to make decisions for me if I can’t? And what decisions do I want them to make?”
As Bray spoke, in a warmly furnished living room at the nonprofit organization’s modern facility on Spokane’s South Hill, 273 people were using Hospice of Spokane services: counseling, support, and nursing care with a focus on comfort. Hospice does nothing to hasten death, Bray emphasized. It aims to help loved ones be close and say goodbyes, as they walk through the journey together. Most hospice clients live at home. Only a comparatively small number stay in the facility’s 12 well-furnished suites.
“The culture of medicine is slowly evolving,” Stiller said, “to a culture where we are caring for the whole person. Recognizing that although technology is wonderful and can do great things, we cannot at all times prevent someone from dying. Dying is natural and happens to us all. You can define what it means to have a good end of your life. You can have a good end of your life. It doesn’t have to be terrible.”