Sunday February 28, 2010
A Look at the New Field of Palliative Care
By Michael Vitez, Inquirer Staff Writer
First in an occasional series.
See related photos taken by
Philadelphia Inquirer staff
photographer and Pulitzer-prize
winner Tom Gralish.
Mary Tole, 74, a vibrant, independent woman until last spring, lay in an intensive care bed at Abington Memorial Hospital in mid-September. For six heartrending weeks, her family had watched as she spiraled downward — no longer able to recognize her daughters, control her bladder, or even swallow.
Her family now faced difficult choices, and doctors asked the relatives to meet with the hospital's palliative care team.
Mary Tole's family, like most Americans, had no idea what a palliative care team was, or what the meeting would be about. The family had heard the noise all summer in the media over "death panels" and "pulling the plug on Grandma."
Was that what this was?
One brother, Greg Smith, 53, of Glenside, didn't want to go to any meeting that morning, but his wife pushed him. "They're going to pull the plug," he worried, "and everything's going to be over."
Another brother, Bob Smith, 64, of Douglassville, Pa., feared doctors had called the meeting "to plan her final days."
Diane Dietzen, medical director of the palliative care team at Abington, led Mary's two brothers, two daughters, and a sister-in-law away from the sterile ICU and into a family lounge, where they sat in a circle, on a sofa and comfy chairs, as if in somebody's living room.
Dietzen shut the door.
The rise of palliative care
Ten years ago, palliative care teams were just beginning to form in a few American hospitals. This year, the 12-person team at Abington will hold 1,200 meetings with families like Mary Tole's.
Her story — and others in this ongoing series — will document life in one hospital at a critical time.
Health-care spending could soon cripple the country. President Obama and Republicans alike say the system is unsustainable, but after a year of sausage-making, they can't agree on legislation to fix it.
As Washington delays, many people who work in hospitals nevertheless know change is coming — and fast.
Abington, a large community hospital with 665 beds and 5,700 employees, lies smack in suburbia, and in many ways typifies a successful U.S. hospital.
It has flourished in the present system, adding a new wing almost every decade.
But admissions are down 8 percent in recent months, cuts of $3 million a month are being considered, and new chief executive officer Larry Merlis told the board last week that a drop in patients "appears to be the new norm" across the region.
Abington must grapple with new realities like everyone else. More procedures will be done outside its walls. More patients will get care at home. And more will come in without private insurance.
Palliative care is medicine's response to the dismal way people have died. One purpose is to help patients and families make hard decisions when facing chronic illness or death.
The end of life is also when the use and expense of health care soars. Medicare spent an estimated $143 billion in 2009 caring for people in their last year. That is enough to provide health insurance to 35 million Americans for a year.
One question palliative care raises is this: How many Americans would want the expensive, all-out assault of intensive medicine if they understood all their choices and likely outcomes?
Talking through a tough time
Before the family meeting, Dietzen read Mary's medical chart. She talked to specialists and the attending physician treating her, none of whom had ever assembled the family and given a complete picture of what was happening.
"Our goal is to do two things," Dietzen said, addressing Beth Anne Tole, 51, a daughter, who lived with her mother in Skippack, and assumed the role of primary decision-maker. "Help manage any pain your mother might be having, and talk about complicated situations. Get you answers to questions so you and your family can make decisions and go forward."
Bob Smith began by saying that he was told over the phone that his sister had a stroke last night, but that when he went down there, the nurse and doctor in intensive care said they didn't know anything about it. "To me, somebody screwed up somewhere," he said.
There had been no stroke. But what became very clear, very quickly, was how frustrated this family was. In six weeks, doctors still could not diagnose what was wrong with Mary, what was causing her decline. The family was fixated on finding a diagnosis, and a cure.
No member was ready to consider withdrawing care, or using less aggressive treatments, and certainly not ready to think about death.
Dietzen gave them a brief summary of what she knew: Mary Tole had come into the hospital in August because she was confused and kept falling. Despite the hospital's best efforts, she had inexplicably gotten worse.
"Now her docs are concerned she's so weak from all the tests and treatments that she may not recover," Dietzen said. "Looks like she developed a new infection last night."
Dietzen also told the family that doctors were thinking of moving Mary to another room, that intensive care might not be the right setting.
"Where she goes, in what room — do insurance companies make that choice or do doctors?" Bob asked.
Dietzen assured him, "Doctors make that choice."
Dietzen told the family that it had a decision to make: Continue with treatments — MRIs and CAT scans, biopsies and antibiotics — trying to keep figuring out what was wrong, or change course and provide comfort measures. Just keep her comfortable for whatever time she had left.
The family also had to consider surgery to put a feeding tube in Mary's stomach. Since she could no longer swallow, she would surely die without one.
"No one is going to come to you and say we should do comfort measures," Dietzen said. "The choice will be the family's to make." She suggested the family ask: "Is this what she would want if the opportunity to get better is not what it was?"
Bob asked, "Can they do something to see how her brain is now, if she knows what's going on?"
Dietzen said that they had already done so many tests, and that the best way was for doctors to examine her at the bedside and assess.
"All of our fears are, 'Is she in there, realizing?' " Greg Smith said.
Doctors feel "she's not able to process things," Dietzen told the family. "That's a horrible thing to think about."
Dietzen spoke softly, choosing her words carefully. She and her colleagues have been trained to give families information in ways they can manage it. She loves thinking about how to convey information to a family, anticipating the reaction, and being honest but not insensitive.
Bob: "I know she wouldn't want to lay there like that."
The family continued to vent.
"When are we going to find the answers — during the autopsy?" asked Beth Anne.
Dietzen said doctors had been frustrated themselves.
"I don't mean to say this is like House, but is there a network they can go to and say, 'Have you ever seen anything like this?' " Bob asked.
"That's exactly what our docs here have been doing," Dietzen said. "They've reached out to docs at Temple and Penn."
Dietzen pointed out that Mary was "full-code right now," which meant the hospital staff would try everything it could to revive her should her heart stop — chest compressions and breathing machines.
Even though the family still wanted doctors to use all their medical wisdom and technology to figure out what was wrong with Mary and to cure her, "we don't want her to be resuscitated," Beth Anne said. "We don't want her laying there hooked up to all the machines to say she's still alive. She wouldn't want that."
"So are we talking days or weeks or what?" Greg asked.
"We don't know enough," Dietzen said. "Not likely to be days. More likely to be gradual."
Dietzen had seen enough patients in this condition to know that most do not survive. But some do. Mary Tole was unusual in that doctors weren't certain what was wrong, and couldn't be sure of how her condition would progress.
Dietzen, 48, who graduated from Swarthmore College and the Temple University School of Medicine, reiterated that the family was not under any pressure to make an immediate decision, and the choice would be its to make.
She advised, "I think at this point, it's 'look at things a day or two at a time.' "
The room was filled with blank faces. This was clearly the first time the loved ones had come together, rather than in shifts, and been confronted with the reality that 74-year-old Mary Tole, their mother, sister, and sister-in-law, who loved to garden and go to Phillies spring training and eat apple pie, who supported herself as a secretary for 27 years after her husband died young, might well be at the end of her life.
They heard and processed, but weren't ready to accept.
"This just sucks," said Beth Anne.
She changed the direction of the conversation, which happens in almost every family meeting, and began telling the team about her mother.
"She lives with me," Beth Anne told Dietzen and Sue Kristiniak, a nurse and team administrator who was also at the meeting. "She wasn't an elderly woman. She took care of her own mother, my grandmother, who lived with us until she died two years ago. She never sat still. Cleaning the house, yard work. She did for everybody. This is not her."
"You figure you go into the hospital and get fixed and go home," Bob said.
This, of course, is the expectation of many Americans.
"Makes you feel so helpless," Bob said.
"I think we're all feeling that in this room," said Kristiniak.
"We'll continue to talk to you every day," said Dietzen. "Try to use as a guideline what kind of care would she like to have."
The meeting ended after an hour. Doctors would continue to treat aggressively. The one exception would be to let her die if her heart stopped.
"It gave you a chance to vent," said Greg Smith, after the meeting. "You feel a little better. It has been very frustrating."
"I thought it was a death panel. I really did," he said. "I thought they're going to pull the plug and everything's going to be over."
Now that he understood palliative care, he felt the team should have gotten involved much earlier.
"In a situation like this, it would have helped us put things in perspective all along," he said. "It was really nice to have one doctor explain everything. At least we feel like we have their support."
Out in the hallway, Dietzen said she was not upset by the family directing its anger at her. "They needed to," she said. "Clearly that was the purpose of the meeting today. We needed to acknowledge everybody was frustrated."
She felt the palliative care team had made its point. "The message," said Dietzen, "is they have to stop thinking about the diagnosis and start thinking about what's best for her."
The origins and the goals
Palliative care took root 10 years ago — with three catalysts — said Sean Morrison, director of the National Palliative Care Research Center at Mount Sinai School of Medicine in New York.
One was a famous study in medical circles, published in 1996, known as the SUPPORT study, that showed Americans often died in pain, their wishes for how they'd like to end their lives unknown or ignored.
The second trigger was Jack Kevorkian.
"That made people, particularly the medical profession, say, 'My God, we should be able to provide a better alternative than assisted suicide to people with chronic illness,' " said Morrison.
The third was millions of dollars in grants, particularly from the Robert Wood Johnson Foundation and George Soros' Open Society Institute, to create and train palliative teams.
Between 2000 and 2006, palliative care programs more than doubled, from 632 programs to about 1,300. About 53 percent of all hospitals with more than 50 beds have a program.
About half the hospitals in the area have some kind of team, even though it might be a single nurse or social worker, said Dietzen, who helped organize a regional group.
Abington's team was formed in 2002 and averages 25 meetings a week. Team members like Dietzen will spend an hour with patients and families — repeatedly if necessary — helping them understand their choices and decide on the path that's right for them.
"The key question is, 'What do they want?' " said Morrison. "For people with really complicated diseases, what they want varies dramatically."
The aim of palliative care, Morrison said, is to understand a person's goals and values and match those with the treatment.
Once they understand, he said, patients often choose the less aggressive path. He said research had shown that palliative care can dramatically improve patient satisfaction — and, by avoiding unwanted and expensive treatments, save an estimated $6 billion a year.
A second meeting
Two weeks after the first meeting, Dietzen and Kristiniak met again with Mary's family.
The family had continued with aggressive care, including putting a feeding tube in Mary's stomach.
A few days earlier, Beth Anne Tole had gone into the hospital room to find her mother choking on the Osmolite nutrition that was being pumped into her stomach through the feeding tube.
The stomach, too full, forces the excess fluid the only place it can go: up the throat. But unfortunately, in her weakened condition, Mary Tole didn't have the strength to swallow, and choking was one of the many risks of a feeding tube.
The palliative care team had explained to Beth Anne that every treatment has a burden and a benefit, and families should weigh one against the other. With a feeding tube, there was a risk that Mary would choke or inhale the fluid into her lungs and get fatal pneumonia.
Mary's older daughter, Roberta Kendra, is a corporate director of a home health-care agency in Tuckerton, N.J. She is well familiar with the risks of life on a feeding tube. And Greg's wife, Donna Smith, is a nurse at Abington. But even their experience didn't make decision-making much easier.
"Looking at her as a nurse," said Donna, "I knew the outcome wasn't going to be good."
But Donna couldn't look at this as a nurse. "Mary's been like a mother to me," she said. "This is killing me."
This meeting lasted another hour, and was similar to the earlier one — more questions, more frustrations over the lack of answers, but a grudging awareness that Mary might be dying, and that comfort measures, such as hospice care, might be the best choice.
All of them had been thinking this, but none had been willing to say it, and found some relief in having a chance to say it here, and express this fear.
But Beth Anne knew her mother had no chance of survival, much less recovery, without nourishment from a tube.
Beth Anne said flatly that she wasn't ready to make such a decision to give up and go with hospice, at least not yet, and everyone else in the family was deferring to her to give the final say.
The right to decide
Why does the family get to choose?
"We've decided as a society that people's autonomy about the very end of their lives outweighs our values about society's expenditure of resources," said Dietzen.
Time and again at Abington, patients were receiving expensive and intensive medicine when death was near, and this was because no one in the family had made a decision to stop.
And nobody made them stop.
"We've never done that as a society, and individual doctors can't do that in the absence of a societal imperative to do that," Dietzen said.
But autonomy can lead to futility.
Peachy Viviano, a nurse at Abington, tells the story of one nurse "who felt no better than a concentration camp guard" because she was inflicting pain, month after month, on a woman being kept alive by ventilator, who was curled up in a fetal position, completely unaware, except to writhe and moan at even a nurse's touch.
But the family wanted full treatment, so that's what the woman got.
"We can say this is futile care," said Maurice Gross, another palliative care doctor at Abington, "but if somebody is not ready to accept that, our society does not approve pushing somebody to do that."
"We see a lot of folks with no trust," he added. "They were denied access to good medical care for so long that when they do have it, along with decision-making power, they don't want to surrender it."
Molly Langford, a nurse practitioner on the palliative care team, said too many families continued with treatments because they felt guilt letting go.
She believes doctors, especially in primary care, should be more involved, more influential, in the decision-making.
"The doctor," she said, "should be saying to the patient, 'Even though we can do this, we shouldn't do this. Your loved one has a terminal illness we can't make better.' Someone has to step into the craziness and say, 'Even though the treatments are out there, they're not appropriate because they create suffering.' Nobody will do that, and it's sad."
So this is what doctors did for Mary Tole.
Mary was admitted Aug. 16 for confusion and falls.
Within two days, she had an MRI, a CAT scan, and a spinal tap, revealing "inflammatory cells" in spinal fluid of "unclear origin."
In the next eight weeks, as her condition worsened, Mary had six spinal taps, and each time the fluid was cultured to look for something different, from bacterial tuberculosis to fungal infections - and all cultures were negative. Many cultures took weeks to get results.
She had nine MRIs of her brain, a cerebral angiogram, CAT scans of other parts of her body, a bone biopsy of the spine to look for bone infection, and a brain-lining biopsy.
She had multiple blood cultures testing for infection.
She was treated for bacterial meningitis, tuberculous meningitis, fungal meningitis, and vasculitis. Doctors also thought she might have cancer, and family members said doctors had told them that they tested Mary for HIV, the virus that causes AIDS, and even considered mad cow disease.
Surgeons placed a shunt in her skull, with a tube running all the way into her stomach, to drain excess cerebral spinal fluid, an abundance that doctors couldn't explain.
She was seen by neurology, neurosurgery, infectious disease, oncology, rheumatology, ophthalmology, palliative care, and a primary medical team.
The 'death panel' hysteria
In July, Sarah Palin, on her Facebook page, called Obama's health-care reform plan "downright evil." She wrote:
"Who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down syndrome will have to stand in front of Obama's 'death panel' so his bureaucrats can decide, based on a subjective judgment of their 'level of productivity in society,' whether they are worthy of health care."
Days later, U.S. Sen. Charles Grassley, an Iowa Republican, added to the combustion.
"In the House bill, there is counseling for end of life," Grassley told an Iowa crowd Aug. 12. "You have every right to fear. You shouldn't have counseling at the end of life. You should have done that 20 years before. Should not have a government-run plan to decide when to pull the plug on Grandma."
Grassley later apologized for his remarks.
Even though a health-care overhaul has stalled in Washington, the House plan would allow family physicians to bill Medicare once every five years for a conversation with a patient — which would be purely optional — about one's choices and preferences at the end of life.
The Senate bill includes no such provision. Morrison, the national palliative care expert, believes this omission is "absolutely" a casualty of the death-panel hysteria.
"There certainly should never have been a controversy," said Dietzen. "The objective was to provide reimbursement for primary-care docs, who are the people who should be having these conversations, to have the time and the incentive to sit with a patient and have this conversation.
"And it seems weird to say there would need to be a financial incentive for that. Primary-care doctors should do that. But . . . a primary-care doctor can't spend hours for those conversations and expect to keep his doors open and pay a staff."
Meg McGoldrick, the chief operating officer at Abington, said palliative care was one of the most vital services at the hospital, one of the most appreciated by patients.
"We spend all this money in the last couple months of life, and it's hard to create quality of life for people," McGoldrick said. "Look at the patients, the elderly patients that we have on ventilators upstairs . . . who are never going to come off the ventilators. What are we doing here? That's what palliative care wants to do. They want to talk to people about the risks and benefits of going forward with treatment and understand what they really want out of the last days of their life or years of their life.
"And to characterize that as 'death panels' is despicable, absolutely despicable. This is a wonderful service that we in health care meet the individual and family's needs. I'm not trying to tell people what to do. We're trying to explain the options."
A mysterious awakening
On Sunday, the 11th of October, after eight weeks in the hospital, Mary Tole woke up.
"Oh, my God," she said when daughter Roberta Kendra, Beth Anne's sister, entered the room. "Look who's here."
Beth Anne came in, showed her the photo album, and Mary knew everybody in it.
After a few days of clarity, Mary grew foggy again. But she was still more alert than before.
Returning from a vacation, Dietzen went to check on Mary. She was in a wheelchair, in her doorway, under a blanket, but up and out of bed for the first time in months.
"Hi, Mrs. Tole," Dietzen said. "Good morning."
"Good morning," Mary responded.
"How are you feeling today?"
"I'm feeling OK."
"Tell me a little about what's been happening in the hospital."
Mary didn't answer.
"You're in the hospital," Dietzen explained. "Do you remember how you got here?"
"I fell down at home."
"Do you remember much?"
"No. I was fine when I went to bed, and when I got up in the morning, bam."
"And when was that?"
"Oh, boy," said Mary. "April 16th or something."
"You came in August, and it's October now," Dietzen said. "You've been in a couple months."
"Doctors have spent a lot of time trying to figure out what's wrong," Dietzen told her. "You got very confused and very weak. You seem a little stronger now, which is good."
Dietzen also asked her, "What would you like to do now?"
"Go home," Mary said.
The stunning cost
The family still doesn't know what was wrong with Mary or why she got better. And it likely never will.
But on Oct. 22, Mary was discharged from Abington.
She had spent 10 days in the ICU and 57 days on the regular hospital floor, and her medical record, in the Abington computer, was 5,771 pages.
The hospital charges were $775,636.70. Medications alone were more than $180,000.
But such charges are rarely paid in full. Insurers negotiate big volume discounts with hospitals. Mary had insurance coverage through a Medicare Advantage Plan, Personal Choice 65, which paid Abington $95,092.71.
Mary owed the hospital a $900 co-payment.
These were all hospital charges. Physicians bill separately. The doctors working on Mary Tole, who are employed by Abington hospital, billed for about $60,000 in fees. Insurers paid $10,900.
In particular, the palliative care team visited Mary and her family 13 times, and insurance reimbursed Abington hospital $854.90 for the team's time.
The biggest payout was $201 for that first hour-long consult.
"Hospitals, physicians, and industry are reimbursed for procedures and tests," said Morrison, the national palliative care expert. "We get paid for doing and offering more. We don't get paid for having conversations and coordinating care. . . . At present, palliative care teams reduce expenditures but don't create revenue."
The palliative care team costs Abington Memorial Hospital twice what it generates in revenue. Total staff costs for the team in fiscal 2009 were $563,231, and total reimbursements from insurance companies and Medicare were $272,000 with $58,108 still outstanding, according to Kristiniak of the palliative team.
Kristiniak said it was difficult to measure money not spent on days in the ICU when a patient elects to go with comfort care, or a family decides to withdraw a ventilator.
But the National Palliative Care Research Center has done studies, and found that hospitals saved $279 to $374 a day for palliative care patients, and from $1,700 to $4,900 per hospital stay.
Morrison said that if America were better at palliative care, at giving people the endings they want, it could save billions, and never need to deny care to expensive patients like Mary Tole because of cost.
He sees that as a win-win.
"The data — and my clinical experience — suggest that when patients and doctors spend the time to talk about their values and goals and the likely outcomes of proposed treatments," Morrison said, "most — but not all — will opt against a trial of all life-prolonging technologies available."
The continuing struggle
Mary left Abington and went to a nursing home — Rittenhouse Pine Center in Norristown — to begin rehabilitation.
Upon admission, Mary weighed 84 pounds.
Her family hoped that she would regain strength, get therapy, even begin to swallow and eat again, and eventually go home.
This reporter visited a month later. An occupational therapist was coaxing Mary to sit up in bed, by herself.
"Give that foot a nudge," said the therapist, Beverly Gordon.
"Yeah, I know," said Mary. "I have to get there."
"You'll get there easier if you put that leg over the edge. . . . You can do it. Give it a shove forward."
"It doesn't want to go."
"Use your muscles."
"I don't have any muscles."
Speaking of the therapist, Mary added, "Oh, my God. I tell you, she's tough."
Mary was still on a feeding tube, still so weak and unable to swallow, but her mind was sharp again. And once she sat up, she worked on tasks to improve her strength and dexterity.
She took clothespins off a piece of plastic, and put them back on.
She put together a little puzzle with blocks, trying to assemble them so the image of a pig was formed.
"I don't know where this guy's head is," she said, looking at the puzzle. "I feel like I'm in kindergarten."
Her hands shook as she held and fumbled with the blocks.
"She had such an overall total body weakness," said the therapist. "She still shakes."
Moments earlier, Mary signed a birthday card to her granddaughter, her first time holding a pen since last spring. She wrote, "Love, Grammy."
Medicare would pay for most of the cost of Mary's nursing home stay for up to 100 days. The family's hope was that before that, Mary would be strong enough to go home, which she shares with her daughter.
Even though Mary was coherent now, nobody in her family had explained to her what she and they had been through, how they had wrestled with decisions whether to stop aggressive treatment, whether to insert a feeding tube, whether to let her die.
A reporter explained much of this to her, and she listened intently.
"I am happy with the decision they made," she said.
"So we did OK?" Beth Anne asked her.
"You did fine."
When told of the hospital charges, and ultimate reimbursement, mother and daughter dropped their jaws. Mary was grateful to be alive, but shocked by what it cost.
"That money's unbelievable, isn't it?" Mary said later.
When Mary Tole left the hospital, she and her daughter were given living wills to complete. Neither will had been touched.
At Abington, about half the patients consulted by palliative care have living wills. The wills help as conversation starters, giving decision-makers some sense of what the family member might want, although a living will rarely addresses a patient's specific and complex predicament.
Wills are most valuable to palliative care teams because they identify a decision-maker.
Mary was still at significant risk of infection, pneumonia, and finding herself back in the hospital, facing those same critical questions: Would she want a ventilator or aggressive medicine?
There was also a possibility that she would never recover enough strength to walk, or to eat well enough to remove the feeding tube, or be able to go home.
Sue Kristiniak posed a very hard question: If Mary ends up facing years in a nursing home, which she dreads, did her family make the right decision after all in agreeing to aggressive measures?
The answer, ultimately, boils down to individual preference. What would Mary Tole, or anyone in her position, want? Some would regard life in a nursing home, on a feeding tube, as torture, while others would cling to it.
The road back home
On Thanksgiving, Beth Anne smuggled in some pumpkin pie to the nursing home, and Mary forked down four heavenly bites.
And that Saturday, Beth Anne took Mary home for the day. Mary was nervous at first, and kept saying she'd better get back. She was afraid of falling.
Beth Anne took her mother home almost weekly through December and into January. Over the Christmas holidays, when the entire extended family visited, feeling everyone's love, being back in her home, even if just for an afternoon, Mary became overwhelmed with emotion, and cried.
In January, Mary needed the feeding tube only at night in the nursing home, and was eating food during the day with a knife and fork.
By mid-month, she was up to 96 pounds, and could even transfer herself from bed to wheelchair, and wheelchair to toilet.
But soon she started vomiting daily. She got fuzzy again, and Beth Anne began to worry about a relapse. Doctors wanted more CAT scans and X-rays, and one day, when Beth Anne was wheeling her mother after a test, her mother said, "Where's Beth Anne? We can't lose Beth Anne."
Beth stopped the wheelchair, walked around, and looked directly at her mother. "I'm right here," she said. "I'm Beth Anne."
"No, you're not."
Mary was soon herself again, and promised Beth Anne she wouldn't return to how she was in the fall, completely lost, but Beth Anne knew her mother had no control over that.
Was whatever nearly killed her coming back?
The 100th day in the nursing home - and final one covered by Medicare - was Friday, Jan. 29.
On Saturday, Beth took her mother home.
Mary was so happy to be where she has lived for more than 40 years, and scared at the same time. Scared of falling, and for good reason. On Monday morning, home only two days, she pulled herself out of her wheelchair, leaned on a bedpost, tried to make her bed - and fell to the floor.
Luckily, she was not hurt. Beth Anne came in and helped her up, and told her mother for the time being, just try and make the bed from the wheelchair.
"I want to walk," said Mary. "Do the things I used to be able to do."
Since Mary still wasn't eating enough, six times a day Beth Anne had to take a small can of liquid nutrition and pour it in a syringe and push it into her mother's belly, through the feeding tube. "It feels weird," said Mary.
Beth has worked at Acme for more than 30 years, and needed to go back to work in two weeks. She was hoping her mother would be strong enough by then to leave her alone, even for part of the day. If not, she'd need to cobble together something with family members and hired help.
The good news was that Mary could sit on her couch in her living room, stroking her 22-year-old cat, next to her beloved Hummel ceramic figurines acquired over a lifetime, and look out her picture window at the peaceful landscape. It took a remarkable effort by her, her family, and the health-care system to get her back there.
Finally, at home, and on that couch, she completed her living will, first given to her months ago by Abington Memorial Hospital. She wouldn't want her heart restarted, and she wouldn't want a breathing machine. But other than that, she'd like whatever aggressive measures were necessary to keep her alive. And if she is incapable of speaking for herself, no surprise - let Beth Anne make the call.
Beth Anne also filled out a living will. Interestingly, when it came time to designate someone to speak for her, she designated two people — her sister and her sister-in-law — and they must agree. This, of course, could present a problem in crisis. What if they can't agree?
But after what she'd been through, Beth Anne felt the pressure was just too great to put on one person.
Postscript: On Feb. 8, Mary Tole's feeding tube was removed at Abington, and she has been eating well. "I hope by the next snow, my mom is ready to shovel," said Beth Anne. "My back sure could use a break!"
Sun, Feb. 28, 2010
Aggressive care until the end
Dennis Mucerino had cancer and cirrhosis of the liver. He was living in Florida and told last spring that he had a week to live.
Tina and Jim Field, who live in Willow Grove, went to Florida and brought him back to their home. Mucerino was the grandfather of Tina Field's children, and he had long regarded her as a daughter-in-law.
Mucerino's liver barely functioned, and as a result, liters of fluid would collect in his abdomen. Doctors, in a procedure known as paracentesis, would remove the fluid from his belly every two weeks. This made him feel much better, like removing a 20-pound weight off his chest. He'd go get a Primo hoagie after each treatment.
Mucerino, 57, did not believe he was going to die, and he certainly wasn't ready. He cherished this time in Pennsylvania, savoring every day with his grandchildren.
By fall, doctors at Abington Memorial Hospital believed the harm from draining the fluid was beginning to outweigh any benefit — that it might cause his kidneys to fail and create more suffering. And that's why they asked nurse practitioner Molly Langford with the hospital's palliative care team to hold a family meeting.
Because of his liver disease, Mucerino's mind and alertness were affected. He couldn't reliably speak for himself any longer.
"We can't make him better. We can't cure it," Langford told the Fields. "We want to give him, for whatever time he has left, the best quality of life he can have. Now that means different things for people. The question is how do we take care of him from here on out? We want to hear from you all, what he'd want."
"He thinks if we keep having it drained, he'll continue living," Tina Field told Langford. "I can't say stop the drainage because he thinks that's what's keeping him alive."
Jim Field added: "That's not a decision either of us wants to live with. Either he wants to stop, or docs tell us they can't do it anymore."
Palliative care was looking to the family for guidance. Tina and Jim Field were determined to honor what they believed were Mucerino's wishes: to continue treatment. The couple didn't want to be the ones to tell doctors to stop. They wanted doctors, the experts, to tell them.
Paracentesis continued through September, into October.
On Oct. 23, Mucerino went into Abington for the procedure, but it caused his blood pressure to plummet and was stopped in progress.
He was rushed to intensive care.
Langford went to see him there. He was moaning, in agony, sensitive even to a nurse's touch.
In addition, his kidneys had failed, as doctors had feared.
Because aggressive medicine was still the plan, a kidney specialist had been called in to consult.
"Can we offer him dialysis?" Langford asked.
The specialist rolled his eyes.
"I don't even know if he'll be here tomorrow. His prognosis is so dismal."
At that point, when told no more could be done, Tina Field agreed with Langford's suggestion that Mucerino be switched to comfort care.
He was made comfortable with drugs, and died the next day.
The Fields did not want to make life-and-death decisions, and don't believe they did. They continued with the treatments that Mucerino wanted until doctors told them they had to stop. They feel they did their best to honor his wishes and gave him the best ending they could.
— Michael Vitez
Sun, Feb. 28, 2010
An only child tearfully resolves to let go
John Walker, 85, suffered a heart attack so devastating it caused brain damage. He couldn't breathe on his own and needed a ventilator.
A few days passed, and his function did not improve.
Diane Dietzen, a physician, and Linda Zappacosta, a palliative care social worker, met with Walker's family to explain the options.
The patient could continue on a ventilator and live for weeks or months; some have survived even a year or more.
Or the family could stop the breathing machine, and Walker would die.
"If you pull that respirator," asked the grandson, Wayne Walker, 39, a SEPTA bus driver, "what's the progression?"
"He likely could continue to breathe for some period of time, days," said Dietzen. "If we take him off, it would need to be with the understanding that he wouldn't be able to breathe effectively, and he would . . ."
Her voice became so soft it was hard to hear what she said, although the meaning was clear. (The team rarely uses the D word.)
"How much of his brain has been damaged?" the grandson asked.
"The critical functions have been damaged," Dietzen said.
"So the way he is right now is about the best he would do?" asked the grandson. "Maybe open his eyes, but not be able to do anything else for himself?"
Dietzen nodded and added: "And be prone to things that happen in hospitals to somebody so weak."
She meant infections, pneumonia, bedsores, and more.
Grandson: "He couldn't even answer to his name?"
Dietzen: "Not likely."
Clarence Branch, 57, the son-in-law, asked, "Once he comes off the breathing machine, it would just be a matter of time before he passed away?"
"That's right," said Zappacosta, the social worker. "And our goal would be to keep him as comfortable as possible and make sure he doesn't suffer. Your decision to take him off the machine would not be the cause of his death. His underlying illness will be the cause of his death. Lots of times a family member feels guilty, and we want to make sure you understand."
Tears slid down the cheeks of Sheila Walker Branch, the patient's daughter. Her face just sagged.
An only child, she had cared for her father at home for two years when Alzheimer's overwhelmed him. When she couldn't manage anymore, he went into a nursing home.
"What would he say if you could ask him?" Zappacosta asked softly. "What would he want?"
Imagining her father's words, the daughter replied, "I do not want to be on those machines."
"That's the important thing," said Dietzen, "to hear his voice."
The daughter was tearful; her husband held her hand. The grandson looked at his mother. The decision was hers.
The grandson finally offered his advice: "Give him medication to keep him from being in pain. He lived a good life, but let him go."
The daughter was just frozen with grief.
Clarence Branch, the son-in-law, looked at his wife and said: "The staff is looking for you to make the decision, but they're not rushing you. The longer you wait, it takes its toll on you and all of us."
Sheila Branch Walker let out a desperate sigh.
"The weight of all this," said Zappacosta. "I'm sorry. Again, think of what your father would say."
Finally, the daughter whispered, "We'll do it tomorrow."
She just stared off into space. Then she said to the team, and really to herself: "He's just laying there. I'm so accustomed to him coming in and saying, 'Hey, sweetheart.'
"This is hard. So hard."
The next day, doctors removed the ventilator, and John Walker died peacefully hours later.
Zappacosta said four out of 10 families in the same situation choose to keep the breathing machine going.
— Michael Vitez