By Katie Kerwin McCrimmon
GRAND JUNCTION – Lung cancer was ravaging Linda Swingle’s body, but she had one simple wish. She wanted to hold her daughter’s first baby.
Thanks to devoted hospice nurses and her husband’s determination, Swingle made the trip from Colorado to California for the birth. Sure, they broke the rules a little. Doctors don’t usually sign off on road trips at such a late stage of cancer treatment. But, hospice care puts patient autonomy first. Linda, 64, was sticking with her goal: California or bust.
It was August of 2005. Roger Swingle bought a Ford Expedition so he would have room to put a bed in the back. He loaded giant tanks of oxygen and made sure his wife of 41 years was comfortable, then set out for Eureka, Calif.
“Linda was just skin and bones, but we made it,” said Roger Swingle, now 70.
The couple witnessed the miracle of a new life. Linda cradled baby Allison when she was just minutes old. She had the chance to tell her own daughter one more time how much she loved her.
“She was so close to our daughter. It meant a lot to Suzie to have her mother there,’’ Roger Swingle said.
They returned home. Linda passed away days later, peacefully in her own home with her neatly tended garden outside. She lived on her own terms and died on her own terms.
“For me and for Linda, we were so much more in control. One of the great things that our hospice nurse said was, ‘You’re making the decisions. Linda is the captain of this ship.’’’
Debate a distraction from end-of-life realities
The fierce debate over so-called “death panels” nearly thwarted passage of the Affordable Care Act as politicians sparred for weeks in 2009.
Opponents of the law claimed that President Barack Obama and advocates for reform wanted to create governmental bodies that would save money by cutting off care for critically ill people. In fact, early versions of the law contained a provision that would have paid doctors to have optional conversations once a year with ill patients about end-of-life choices.
Ultimately, the Affordable Care Act passed in 2010 without any provision offering paid consultations. But, the issue surfaced again late last year. On Christmas Day, the New York Times published a story about the Obama Administration’s quiet attempt to resuscitate the concept. Advocates for end-of-life planning had created a new Medicare regulation that would have gone into effect this year, allowing doctors to discuss choices with their patients.
But, the concept still was politically toxic. Within days, the Times reported that the Obama Administration was reversing course. Administration officials removed the regulation, not wanting to stoke the death panel debate again when they faced emboldened opposition to the entire health care law from Republicans now in control of the House.
While politicians parry and thrust, on the ground many doctors continue to spend hours counseling their patients about end-of-life choices regardless of whether they are paid.
Research shows that these conversations actually help patients live longer, boost their quality of life and save money. Communities with strong hospice programs, like Grand Junction, spend far less on Medicare than communities where patients routinely spend their final days receiving aggressive medical care in hospitals.
According to Dartmouth Atlas of Health Care data from 2001 to 2005, Medicare patients in Grand Junction spent almost twice as many days in hospice care at the end of life as the national average: 22 compared with 13 across the country. Their total Medicare costs at the end of life were about $7,000 less than the national average: $18,700 in Grand Junction compared to $25,400 nationally.
A day at Grand Junction’s hospice care center costs about $650 while the same patient would incur costs of about $3,000 per day in a hospital. Most hospice patients receive care in their homes, which costs far less, but brings great satisfaction to families who prefer familiar surroundings. The Grand Junction hospice serves patients in a huge geographical area, spread out over 2,000 square miles. Those who need care at the center find an atmosphere deliberately designed to invoke the elegance of the Broadmoor Hotel rather than a cold institution.
“Hospice is really about living until the moment you die, having our lives be more joyous,’’ said Christy Whitney, an RN who is president and CEO of the Hospice and Palliative Center of Western Colorado, considered a national model for hospice care.
Stained glass fills the center. Design motifs on the wall include a Frank Lloyd Wright-inspired Tree of Life with geometric branches and leaves that reach toward the heavens.
“We not only care for the whole person, but the whole family. We address the impact of end-of-life issues on the whole community,” Whitney said.
Back when Whitney started working as a nurse in 1976, doctors kept death a secret. They would never tell a patient or family member if the outlook was grim and nurses were supposed to refer patient questions back to closed-mouth doctors. But Whitney learned early that truth gave patients peace. One of her first patients was a 43-year-old breast cancer patient who knew she was going to die and wanted to be home for Christmas with her two young daughters. Whitney practically had to sneak her out of the hospital, but made it happen. The lesson stuck with her.
“We give people good care. We give them a reason to live,” she said.
Terms and Resources
Advance Directives: describes two types of legal documents: living wills and health care powers of attorney. Documents allow a person to give instructions for future medical care if they cannot speak for themselves. Fill out your own advance directive: MOST (Colorado Medical Orders for Scope of Treatment)
- Do you want CPR?
- Do you want comfort care, limited intervention or full treatment?
- Do you want antibiotics?
- Do you want an artificial feeding tube? If so, how long do you want to be kept alive by the tube?
Living Will: written description of a person’s wishes should they suffer from a terminal illness or a persistent vegetative state. Easy fill-in-the blank form for anyone who is health or sick, age 18 or older. Five Wishes
Power of Attorney for Health Care: authorizes a trusted advocate to make medical decision on a patient’s behalf.
Palliative Care: team of medical providers actively manages current symptoms ranging from pain to depression to shortness of breath, nausea, poor appetite and sleep problems. The focus is on comfort care and patient choices. Available for any ill person. Hospice care includes palliative care.
Hospice care: patient-centered care in the home, a nursing facility or an inpatient treatment center for patients in the last months of life who have decided to stop treatments.
A Duke University study found that hospice care reduced Medicare spending by an average of $2,300 per patient. The savings would increase as patients took advantage of hospice care for even longer periods of time. The median length of hospice use was 15 days during the 20 years the researchers studied. They found that increasing hospice participation to the final eight weeks of life improved quality of life and saved money.
This debate is not esoteric. The U.S. spends one-third of all health care dollars in the final year of life. As health costs continue to soar, policy experts are eager to find ways to reduce end-of-life costs while also giving patients high quality care.
Hospice and palliative care save money
Two promising avenues are palliative care and hospice care. They are not the same. Any ill patient can receive palliative care, which focuses on reducing pain and improving quality of life. So, for instance, if an 87-year-old is taking medication to prevent bone loss or heart disease, but it’s causing her to lose her appetite and feel lousy, a palliative specialist might reduce or stop the medicine.
Rather than giving medication to prevent disease, palliative care focuses on active management of current symptoms ranging from pain to depression to poor appetite and shortness of breath. Palliative care builds trust and alleviates suffering. Patients who feel that medical providers are listening to them often do better.
A study in the New England Journal of Medicine found that providing palliative care even to patients who are continuing aggressive cancer treatments extended their lives and improved their quality of life. The study raised an important question: does talking about death actually help people live longer?
Hospice care is designed to give comfort to people who have decided to stop treatment and have fewer than six months to live. Patients can receive care at home, in a nursing home or in a care facility, like Grand Junction’s stunning mission-style facility or the just-opened Denver Hospice Inpatient Care Center at Lowry. The soaring 35,000-square-foot building features warm wood and rock accents with fireplaces and a hydrotherapy spa. Each room has French doors that lead to patios where patients can go outside in rolling hospital beds to feel the sun.
For people like Roger Swingle, who have struggled with real, heart-wrenching decisions at the end of life, the political circus over death panels is appalling.
“I’m the most conservative Republican you’ve ever run into and I think the Republicans are out to lunch on this death panel nonsense,’’ said Swingle, 70.
A self-described Tea Party fiscal conservative, Swingle thinks end-of-life planning makes sense on all fronts. It gives people responsibility for their own choices and doesn’t bankrupt our medical systems. Swingle found instant relief and support from the moment he and his wife first met their nurse from Hospice & Palliative Care of Western Colorado.
“She got to know us and we got to know her,” Roger Swingle said. “All of a sudden, I could call hospice and they’d advise me on what I should do. We never went to the ER again after that.”
Linda Swingle had been diagnosed with lung cancer in 2000.
“She’s a fighter. From the start, she was given three to nine months to live. The oncologist wasn’t optimistic,” Roger Swingle said.
But Linda wanted to live as long as possible to share milestones with her three children and five grandchildren. Two more have been born since she died.
“Frankly, if it was me, I don’t think I would have gone through all she did. But, in hindsight, we were blessed that she lived five more years,” Swingle said.
Throughout Linda’s illness, the Swingles struggled to navigate appointments with multiple specialists who never seemed to communicate with each other. Roger Swingle called it “stove-piping.” At times, he and Linda felt isolated, uncertain how to proceed when a health setback invariably happened late at night or on a weekend.
“There’s this terror. Do we go to the ER or not? There’s the awful unknown of what to do, the fear of making the wrong call. It was driving both Linda and me cuckoo,’’ he said.
Roger Swingle heard about a program through the Grand Junction Hospice. It wasn’t full-blown hospice care, but it would help the couple take better care of Linda at home. He wasn’t sure whether his insurance would pay the relatively inexpensive $1,200 fee (less than a single trip to the hospital). He decided he would pay out of pocket if necessary.
Even years later and newly remarried, Swingle’s voice cracks with emotion as he recalls the first moment he and Linda met their hospice nurse.
Most patients want to die at home
“It was like night and day,” Swingle said. “All of a sudden, somebody understood where we were. Beth (our hospice nurse) would call the doctors and coordinate things. She’d come check on us. Before then, I didn’t know there was any alternative except the hospital.”
Where people die
- 2.4 million people die in America each year
- Most say they want to die at home
- 50-to-60% of Americans die in hospitals
- Another 25-to-35% die in nursing homes
- Only about 20-to-30% of Americans die at home
- By 2030, the numbers of Americans 65 and older will more than double, going from roughly 35 million in 2000 to about 71.5 million.
Source: U.S. Census and study data gathered by the nonpartisan Reclaiming the End of Life Initiative
Finally, he could stop dialing 911.
“I stayed home with Linda. That was much more in control and peaceful. I was well enough physically and mentally and the hospice nurses helped me. If you have to lose a spouse after 41 years, it was the best experience we could have had compared to dying in a hospital.”
Patient after patient who has received care through hospice programs recounts the same relief.
Meg and Warren Morrow spent a few days at the new care center at The Denver Hospice last week. Both are retired art teachers and passionate travelers. Meg, 70, learned she has metastatic melanoma four years ago. She has participated in clinical trials, but her cancer was not improving. The couple opted for palliative care, then hospice.
“It’s a great help if for no other reason than that they’re at the other end of the phone if you need them,” Warren Morrow, also 70, said. “The hospice has been great. We’ve had a number of friends who have died. All of families said they wished they had gotten involved in hospice much sooner.”
Meg Morrow has been receiving intensive pain medication. The cancer has spread to her knee and every 15 minutes or so, she winces in pain. The care center can provide a respite for exhausted family members or nurses can ramp up pain medication, as in Morrow’s case.
Warren Morrow said he appreciated the beautiful art on the walls and the home-like setting at the care center. Their toddler granddaughter came for a visit and was free to roam the halls or try out the piano in the great room. Visitors can come any time and can make a meal in the facility’s kitchen.
Morrow and his wife of 46 years also welcomed straight answers from their doctors.
“People want to know where they are and what they can reasonably expect. That should be part of a doctor’s job,” Warren Morrow said.
Without medical directives, doctors can’t determine patients’ wishes
Dr. Pamela Tyrrell of Denver has practiced geriatric medicine for more than 20 years. She’s the medical director at two Denver-area nursing facilities, which provide both rehabilitation and long-term care. She was dismayed that politicians did not include end-of-life counseling in the health law. But, frankly it makes little difference in her practice. She has always engaged families in tough conversations.
“It’s not about death. It’s about choices. Discussing choices helps patients feel in control. It may be as simple as choosing the right pain pill or deciding not to be hospitalized again,” Tyrrell said.
Young or old, make your wishes known
Create a living will, including decisions about how much medical intervention you want.
- If you’re brain dead, do you want a feeding tube? Unresponsive patients can live for years with feeding tubes.
- If you’re elderly and frail and your heart stops, do you want CPR? On older people, CPR can break bones, and the success rate is very low.
Patients have choices. There is middle ground. Patients can choose to receive some care, but can decline to go to the hospital for every ailment.
- Talk with your physicians.
- If you are elderly, talk with your spouse, children or caretakers. Tell them what you want. Write it down. Select an advocate to serve as your medical power of attorney.
- If you are young, don’t forget to fill out your own living will. Accidents happen.
- Adult children should be specific with aging parents. Ask the tough questions. Insist that parents write down their preferences. Children of aging parents who have not specified their desires often feel guilty and ask for more aggressive treatment than a dying parent might have wanted. Do you want aggressive medical treatment or do you prefer comfort care?
- At the end of life, where do you want to die? At home, a nursing home, in a hospital? Most people want to die at home. Most die in a hospital.
“I do it because it’s the right thing. I’ve never been reimbursed. But, people like me are going away. In primary care, we talk and we think. Talking doesn’t get reimbursed. So fewer and fewer medical students are becoming primary care doctors. We can’t sustain this.”
Yet talking and thinking produce tangible results. Take the case of the baby aspirin.
Tyrrell had an 80-year-old patient who has been on dialysis three times a week. The woman kept having to go to the hospital because of stomach bleeding. She was on the verge of being sent into a hospice program. But the woman did not want to die. She wanted to feel better.
Tyrrell practices palliative care with all of her sick patients and therefore puts treatment of symptoms ahead of prevention of disease – especially with an older patient. Tyrrell noticed that the woman was taking a baby aspirin to prevent heart disease. She thought that the aspirin might be causing the bleeding, but the patient’s daughter was concerned that it was vital to prevent blood clots.
Tyrrell consulted with the patient, the family and two doctors before everyone decided to halt the aspirin. None of that time was reimbursed, but it was worthwhile.
The patient improved dramatically. The bleeding stopped and so did the expensive hospital trips.
“She turned into a new person. Her daughter said, ‘I haven’t seen her look this good in 10 years,’’’ Tyrrell said.
Other cases don’t turn out so well. Many become prolonged, agonizing situations where doctors must communicate with multiple family members who sometimes disagree. Doctors often see a pattern where adult children who live far away from a dying parent often want multiple interventions – even if a parent doesn’t want aggressive treatment. The guilt over living far away from a loved one can spur irrational behavior. Studies show that doctors and family members guess poorly about how much medical intervention a patient would want.
In one case Tyrrell dealt with 20 different family members after a 76-year-old man had two successive strokes on both sides of the brain. He became incapacitated and had left no medical directive.
“I can’t discuss with the patient what he wants,” Tyrrell said.
So she was left to sort out family wishes. First, the family chose to have a feeding tube surgically installed, which extended the man’s life. Then, for one year, they wanted full CPR if his heart stopped. Finally, family members realized that the man’s quality of life had declined to the point where they were willing to allow him not to be resuscitated. He died two years after the strokes.
“We will spend limitless amounts of money at the end of life even though we’re denying basic care to children and the working poor,” Tyrrell said. “This is costing the Medicaid and Medicare system billions.”
She works with all her patients to try to get them to write down their desires.
“Many will say, ‘Honey, if the good Lord wants me, I’m ready to go.’’’
Dr. Amy Mohler is chief clinical medical officer for Hospice and Palliative Care of Western Colorado. She finds one consistent wish from her patients.
“They don’t want to be left alone,” Mohler said.
Back when she was in medical school, there was no training in end-of-life care. Now some doctors learn how to have critical conversations with their patients. Mohler has learned the art of listening well.
“You make sure you have the time you need, that you have a quiet setting. You need time to be empathetic,’’ Mohler said. “It’s less talking and more listening. It’s common that a patient wants to die and families are not ready.”
Mohler had one 60-year-old patient whose kidneys were failing. She also had terminal pancreatic cancer. The woman had been enduring dialysis treatments three times a week and finally decided to stop. That decision empowered the patient.
“I’m so relieved. I don’t have to go to dialysis anymore. It’s so liberating,” the patient told Mohler.
“I wonder if someone had explained to her that she had choices if she would have stopped sooner,” Mohler said.
Good care requires informed consent, frank talk
Dr. Michael Pramenko is president of the Colorado Medical Society and a family physician with Primary Care Partners in Grand Junction. His office is next door to Grand Junction’s hospice.
Pramenko was hopeful when the new regulation was set to take effect in early January, allowing him to be reimbursed for once-yearly conversations with sick or elderly patients. He knows that patients feel most comfortable having the toughest of conversations of their lives in his office.
“This is where you’re honest about health issues. What bigger health issue is there, other than birth, but death?” Pramenko said. “This is part of taking proper care of people.”
When those tough conversations happen, Pramenko gives honest answers. For instance, he tells his cancer patients that chemotherapy may be extremely hard on their bodies. In some cases, it may hasten death, rather than save a life.
“Some people can’t make a decision to let go. You lay it out for them. That’s called informed consent,” Pramenko said.
He feels fortunate that when one of his patients is being treated at Grand Junction’s Hospice Care Center, he can go next door to visit them.
But Pramenko believes that throughout the country, we must grapple with questions about end-of-life care.
“We spend most of our Medicare dollars in the last six months of life,” Pramenko said. “If we’re going to keep Medicare going, we’re going to have to deal with the process of how we die.”
“That’s not (advocating for) ‘death panels,’” Pramenko said. “That’s being responsible with public funds.”