By Lynette Norris
Greene Publishing, Inc.
End-of-life planning isn’t just for the frail, the elderly or the terminally ill, Gini West of Big Bend Hospice told those gathered at the 55 Plus Club.
West, Director of Business Management for Big Bend Hospice, is a registered nurse as well as a Certified Hospice and Palliative Nurse (CHPN), and as guest speaker at the 55 Plus Club’s February meeting, she was there to bring the message that early planning is often the best way to plan. As several tragic, high-profile cases have illustrated, even young people can find themselves in need of end-of-life care, or for someone to make decisions on their behalf should they be incapacitated. If they have not had those important conversations with their loved ones already, or put any of their final wishes in writing, those they love will be left with enormous decisions to make, often in a very short amount of time, and their decisions may or may not be in accordance with those of the patient.
West was instrumental in bringing the PEACE (Planning Early About Care at the End) program to the eight-county area that includes Madison.
“Death is a fascinating topic,” she told the audience. “We know that death will occur, but we spend our entire lives trying to avoid it and avoid talking about it.” It’s not unusual for patients to not want to fill out end-of-life documents even after they have come to hospice.
Everyday language is full of euphemisms for death, some poetic, some more mundane: passed away, gone to glory, gone home, bought the farm, kicked the bucket, checked out.
The PEACE Program brings those issues surrounding death back into the light. “For too long, we’ve backed off and let the medical community take over. The PEACE Program, Advance Directives and the Five Wishes will bring some of that control back to us.”
The PEACE Program seeks to educate people about what their options are, and explain what those options will include. Very often, medical professionals will simply ask loved ones to make decisions, without offering much guidance or information. They don’t talk to patients and caregivers about options because they are often afraid of talking the patient or family into something they didn’t want.
The other issue Big Bend Hospice is now addressing is that sometimes a patient’s Advance Directives are not being honored because of disagreement among survivors about the interpretation. Advance Directives and Five Wishes documents were being distributed to people, but there wasn’t enough solid education going along with those documents about what the choices were and the importance of sitting down with all friends and loved ones, and having those very important conversations, answering those questions and making sure that those wishes in the advance directives were clearly understood, by everyone who was likely to be involved in the end of one’s life. Loss of someone young or middle aged and healthy is often sudden and unexpected, and the pain of that situation can’t be denied. Does your family know what you would want them to do on your behalf, or will they have to guess as they make those decisions quickly, without a clue, during a time of crisis, standing in a hospital corridor or beside a stretcher as a doctor awaits their decision?
“Sit down and have those conversations,” she said. “It’s that simple.”
Knowledge is power, and the more people know about death, the less they fear it. Know what the options are. Know what’s possible and what’s realistic. How do you feel about being on a ventilator for a long period of time? How do you feel about feeding tubes, if you’re in an ICU with no realistic chance of recovery or going home? Feeding tubes initially were never designed to sustain life indefinitely, and ventilators were meant to keep people alive for a very short period of time while their bodies healed. These technologies were originally intended to buy doctors extra time they needed to save someone’s life and send them home again.
Today, according to a recent study, 98 percent of patients in ICUs around the country have no realistic chance of ever recovering and going home.
By becoming educated, people can feel more confident about discussing these subjects with their families and making sure their families will honor their wishes.
“A lot of conversation needs to take place,” said West.
And it needs to take place early. West cites the example of a strong, perfectly healthy 33-year-old-man who fell out of a deer stand and broke his neck. He never wanted to be on a ventilator, but he had never told anyone that. Fortunately, he was able to write a short note to that effect. Had he not been able to do that much, he would have been consigned to a fate he had never wanted.
In another case, family issues coming into play determined how one young woman spent her last days. She was dying of end-stage breast cancer, but she was estranged from her family because they disapproved of her partner, whom she had been with for eight years. During those eight years, she had never once spoken to her family, not even after being diagnosed with her illness. One night, while she was in terrible pain, she was transported to the hospital, but by the time she arrived she was terribly confused. The hospital staff, not knowing about the situation with her parents, notified them. They arrived before the young woman’s partner and took over her health care decisions from there on out. Because the young woman had no advance directives about whom she wanted with her when she died, her partner was not allowed to see her again, and because she was incapacitated on pain medication, she could not countermand her parents’ actions. Her partner, who had spent eight years with her, was not allowed to be at her bedside when she died.
West spoke of her own brother, lost very suddenly to an aneurysm 11 years ago. They all thought they knew him well, but in the time of crisis, they did not have the comfort of certainty about what he would have wanted, and they had a very short time in which to arrive at a decision. Even years later, they still don’t know for sure.
Another important part of end-of-life decision-making is naming a health-care proxy to see that your wishes are carried out, and it is extremely important to make sure they would be willing to do so, even if they might disagree with your decisions. This is another very important conversation, because sometimes very close friends and family may admit to being unwilling to go along with certain wishes, especially those involving termination of life support. Talk to the person and be clear about they do and don’t want to be responsible for. Don’t assume anything.
In Florida, if you don’t have advance directives or a health care proxy you have designated to make decisions on your behalf, the state will appoint a proxy for you. First on the list would be a spouse. Second would be your oldest child, then your next oldest child, and on down the line. Next would be siblings.
“If we care about our loved ones, we can be there for them by providing all this ahead of time,” said West. “And when the time comes, hospice will be there for you.”
This is where the Five Wishes come in. How you want to be treated, how comfortable you want to be, how you would like to spend your last days.
“All those little things that make up your quality of life, all those little things that make you, you…they shouldn’t disappear when death is near. Quality of death is at least as important as quality of life.”
The document is not really needed, if all the family is in agreement with your wishes, but it assures that, in a very emotional time, your wishes are still honored. In that respect, it’s like insurance.
For more information about Big Bend Hospice and the services it offers, contact the Madison office at (850) 973-8131, or the toll-free number at 1(800) 772-5862, or visit the website at http://www.bigbendhospice.org/.
By Lynette Norris