Planning for last moments: Lack of directions to kin adds anguish to parting
3/23/2005This story first appeared in The Blade and on toledoblade.com on March 16, 2003.
The heart attack happened on a Monday morning. Wednesday he was dead.
During those three days Frank Petro of Toledo was in the hospital, he was unconscious and couldn't speak. But his wife, Kathy, and their four sons had to decide whether Frank wanted to be kept alive on life support.
The couple, who had been married for 35 years, had never discussed a decision like this.
In the end, Mrs. Petro ultimately decided Frank wouldn't want to be hooked up to machines and slowly die. Half an hour after being taken off life support, he passed away.
But with the one-year anniversary of her husband's death approaching on Tuesday, Mrs. Petro said a lingering thought keeps crossing her mind:
"It would have been nice to know if what I did was right."
Tired and frustrated with hearing stories like this, local hospital and hospice officials and others are organizing a community-wide effort to improve end-of-life care. The program would educate the public, doctors, and others about what's involved with such life-or-death decisions and improve how health-care facilities deal with those decisions.
"Now most people don't think about it until they're in a crisis," said Judy Seibenick, director of Hospice of Northwest Ohio. "We used to blame doctors, but it's a societal issue. People don't want to admit they're going to die."
Mrs. Petro hopes Ms. Seibenick and the others are able to spread the word about end-of-life care. She said if she and her husband had talked about what he wanted, "it would have saved us three days of agony."
Not everyone will go through what Mrs. Petro did. Some people die suddenly. Others are conscious and die slowly so they have time to make their wishes known. But one Wisconsin study determined half of those who die are unable to make decisions for themselves at the time of death.
Without prior discussions about a patient's wishes, or having paperwork like a living will to refer to, families and physicians often struggle with whether to try to prolong life.
Nancy Host, administrative director of home care and hospice for ProMedica Health System's Continuing Care Services, said end-of-life planning is just as important as other major life decisions.
"We do all these things in our lives to plan for the future, whether it's going to college, a wedding, or a 50th wedding anniversary," she said. "I see this as being right in that group, even though it's a very uncomfortable discussion to have."
Two weeks ago 30 representatives from area hospices, hospitals, and other agencies met in Toledo to receive training on end-of-life care as well as to discuss ways to educate the community about the need to make decisions beforehand. The group is calling itself the Toledo Area Advance Care Planning Coalition.
To get a sense of the task before them, they did a random survey of medical records to see how many people had what's known as a "durable power of attorney for health care" or "health-care power of attorney." Unlike a power of attorney for business decisions, a durable power of attorney gives someone the right to make medical decisions for you if you are unable.
The survey results did not surprise the group. Medical records were examined for 343 patients with an average age of 66. Only 16 percent had a durable power of attorney in their medical record.
The results are consistent with those found across the country. But there are places where the public has become much better educated on end-of-life matters. When hospitals and other providers in LaCrosse, Wis., discovered poor results in a 1991 examination of medical records, officials there decided to start a community-wide effort to improve what's often referred to as "advance care planning."
Simply put, advance care planning is the discussion - ideally when someone is healthy or long before serious illness sets in - of how a person wants to be cared for at the end of their life. The discussion often results in formal, written instructions like a living will or some other document. A living will establishes in advance the type of medical care a person wishes to receive if terminally ill or permanently unconscious and unable to communicate treatment wishes to family and doctors.
The LaCrosse program, referred to as "Respecting Choices," involves widespread training of health-care staff, churches, and volunteers so they can educate patients and the public about end-of-life care.
The program had a dramatic effect. In 1996, LaCrosse officials re-examined medical records and discovered 85 percent of those who died had written "advance directives" - instructions on how to be cared for as they neared death - and 96 percent of those instructions were in patients' medical records.
Organizers of the Respecting Choices program have now taken their effort nationwide and offer training to other communities. Linda Briggs, a nurse and trainer with that program, led discussions at the Toledo meeting and trained local people who can now act as trainers.
The bottom line, Ms. Briggs said, is that it is critical that families talk about their wishes before it is too late and a patient cannot make their wishes known.
Dr. Fernando Crotte, a Toledo geriatrician and internist, wishes more patients followed Ms. Briggs' advice.
He recalled a recent example at a local hospital where a patient with a terminal illness was unconscious and unable to respond. He and other medical specialists repeatedly told the family that nothing more could be done.
"It was futile. If we were doing anything, it was just prolonging suffering," he said.
But the family refused to consider taking the man off life support. He and the medical staff, while frustrated with the decision, continued to make every effort to keep the man alive. They shocked the patient and engaged in other efforts to resuscitate him every time he went into cardiac arrest.
"I thought to myself as I was doing this, 'I sure wish I knew what the patient wanted,'" he recalled.
The man eventually died, never having regained consciousness. Experiences like that led Dr. Crotte to join the local group in its campaign to improve end-of-life care and education.
Last Acts, a national coalition formed to improve end-of-life care, grades each state on how it fares in care for dying residents and on the availability of living wills, do-not-resuscitate orders, and similar information in its report "Means to a Better End: A Report on Dying in America Today." Ohio received average to poor grades overall. Michigan had a few weak areas but received higher marks overall.
Last Acts praised Ohio for its generally high numbers of physicians and nurses trained in so-called palliative - or ease of suffering - care. However, the organization said only 29 percent of Ohio hospitals reported having hospice programs.
About 27 percent of the state's citizens over 65 who died received hospice care and the average length of stay in a hospice program was 18 days. The organization said 60 days is considered the minimum amount of time for a maximum benefit. Finally, the state was criticized for poor advance directive laws.
Last Acts said Michigan's advance directive laws and policies were excellent, and the state received high marks for the number of doctors and nurses trained in palliative care. The state received average marks for use of hospice care and poor marks in the length of stay in hospice.
Patricia Beach, palliative-care specialist at St. Vincent Mercy Medical Center, said families too often have a skewed view of modern medicine's capabilities. Doctors might ask families if they want everything done in an attempt to prolong life, but families do not always understand the implications of such a directive, she said.
"They say, 'Of course I want everything done,'" Ms. Beach said. "They think that means you want everything done so the person can be the way they were, but that's not always what's being said. They can do everything, but you may be at a lower level of function."
The local coalition, of which Ms. Beach is a member, is still working on its plan but hopes to offer guidance that will improve things in three main areas:
Community education. The group will develop a plan to educate the public, including offering presentations and talks. Topics discussed would include what the public should know about advance directives, as well as information about living wills and other documents. The coalition also hopes to establish partnerships with other groups with an interest in helping.
Professional education. Churches and other religious houses of worship will be approached, both to educate them and see if they would be willing to act as trainers and resources that the coalition may refer people to. Doctors, nurses, and others will be approached about what they need. One idea is to have people trained in each hospital who could talk more with patients about advance care planning.
The paperwork process. The coalition wants to get hospitals, nursing homes, and others to develop a standard form that outlines a patient's end-of-life wishes that is both easy to understand and travels with the patient wherever they're cared for. One problem with different hospital systems is they have different medical records. That makes it difficult to transfer instructions from one place to another.
Ms. Briggs warned the Toledo coalition that while having written advance directives is wise, coalition members should not assume that just filling out a form takes care of the problem. She said there are gaping holes in Ohio's current living will and durable power of attorney documents. Paul Croy, a Toledo area attorney who handles estate planning, agreed.
Ohio's living will law states that someone has to have a terminal illness or be in a "permanently unconscious state" before the will kicks in. But to be terminal, the current law says death is expected to occur "in a relatively short period of time," which is pretty vague, Mr. Croy said.
In addition, there are some diseases, such as end-stage Alzheimer's, that do not fit these criteria. Mr. Croy said there is not a lot of help for the public in translating the language on the forms.
There are also cases - and no one knows for sure how common this is - where medical staff ignore written instructions. That can happen because family members disagree over whether to withdraw life support, despite what a living will states. When a disagreement arises, doctors often err on the side of caution and continue life support.
While medical staff may have the best intentions at times like this, ignoring the wishes of a patient can cause immense emotional pain in some situations, according to Jenny Reynolds, who lives near Elmore.
Mrs. Reynolds said her mother talked with the family about her wishes after being diagnosed with terminal lung disease. She also completed a living will, a durable power of attorney, and eventually, a "do not resuscitate," or DNR, order.
One night her mother suffered a stroke and began to gasp for breath. Terrified that her mother was in pain, Mrs. Reynolds said she called an ambulance service, thinking they would come and advise her what to do.
Instead, she said, the squad showed up and immediately began to try to revive her mother. She said she screamed at the squad about the DNR order and waved it in front of them.
A member of the squad took the paper from her, made a disparaging comment, and threw it on the floor, she said.
Paramedics stabilized her mother, but on the way to the hospital she said she heard a heart-monitor machine give the flat-line sound, indicating her mother's heart had stopped again. Paramedics again revived her.
Her mother eventually was discharged from the hospital to a hospice. She lived five more months but never recovered from the initial stroke and had withered away to a mere 50 pounds at her death.
"I'm thankful she wasn't in pain [at hospice]," Mrs. Reynolds said. "But there she was in diapers.... That's not what she wanted.... It isn't about living, it's about quality of life."
While their stories are different, both Mrs. Reynolds and Mrs. Petro say they suffered from ignorance about end-of-life care. In Mrs. Reynolds' case, she said medical staff did not respect her mother's wishes. In Mrs. Petro's case, she and her husband never had the discussion about end-of-life care.
"You put it in the back of your mind and say you'll cross that bridge when you come to it, but that's not the way to go," Mrs. Petro said.
She wishes she and her husband had talked about it.
"His last words to me were 'We'll get through this,'" she said. "He didn't have a notion he would die."
Talking about what should be done if someone faces a life-or-death decision is difficult for many people and uncomfortable at best. Yet consider the following facts as reasons why you and your loved ones should make your wishes known:
Most people say they'd prefer to die at home rather than in a hospital. Yet about 80 percent of Americans die in hospitals.
About 70 to 75 percent of Americans die after a prolonged chronic illness, and 10 to 30 percent of those have their preferences on end-of-life care ignored. Often it's because their wishes were not put in writing or strongly expressed to their families.
Hospital patients whose hearts stop beating and who receive cardiopulmonary resuscitation (CPR) are typically restored to normal function less than 10 percent of the time.< Usually the procedure is not successful at all, or patients are revived but suffer brain damage or other serious complications.
In a survey of 258 Chicago doctors in 2000, the American Society for Clinical Oncology reported that 40 percent of the doctors said they would tell terminal patients inaccurate information about their prognosis in an attempt to avoid scaring the patient.
For more information about advance care planning for end-of-life situations:
The Toledo Area Advance Care Planning Coalition may has can be reached at (419) 725-0523.
Last Acts, a national effort funded by the Robert Wood Johnson Foundation, can may be found on-line at www.lastacts.org.
Sources: Last Acts, Respecting Choices, Toledo Area Advance Care Planning Coalition.