Dr. Paul Marik discusses end of life care in Virginian Pilot
Story Date: Tue, 13 Sep 2016 09:32:00 EDT
Dr. Paul Marik has spent three decades in what some call God’s waiting room.
As chief of critical care at Sentara Norfolk General, Marik has seen thousands of patients on the brink of death in the intensive care unit.
This day in mid-August, there’s an 88-year-old woman who inexplicably started having seizures several days ago, and a woman in her late 60s who appears brain dead but whose family wants to hold off on that determination until more relatives arrive.
Such end-of-life chapters unfold outside a national discussion that often stokes fears of government death squads and health care rationing. For Marik, who is also chief of the pulmonary and critical care division at Eastern Virginia Medical School, the bottom line is this:
Talk about it.
People need to consider what they want at the end of their lives and to discuss their wishes with loved ones. Do they want ventilators and feeding tubes and dialysis if no treatment exists for their condition? Who do they trust to make those decisions if they lose consciousness?
“People have not had the conversation; 80 percent have not. The place to do that is not here,” Marik says, pointing to a bay in the emergency room. “The point when someone is busy gasping and dying is not the time to say, ‘Do you want us to put this tube down your throat?’ It’s so important to have the conversation before then.”
It’s a discussion that needs to happen not just in living rooms, but in offices of primary care doctors and specialists when patients are in what’s called end-stage disease – and even sooner.
A federal nod to the importance came earlier this year: Medicare began covering end-of-life discussions with doctors or licensed caregivers. David Murray, executive director of Advance Care Planning Coalition of Eastern Virginia, estimates that more than a million Hampton Roads residents lack advance care directives. The coalition is trying to change that with new initiatives at hospitals, doctors’ offices and community events.
“We want to relieve distress, find a cure if there is one, but what if there isn’t?” Marik asks. “On the health channel, they show all these success stories. Someone in a coma for years comes out of it.
“But they don’t show people who can’t care for themselves. They don’t show the reality. Americans have an unrealistic expectation of medicine. People think medicine will cure everything, and death is a failure. But death is a part of life.”
Marik weaves his way down the hall of the intensive care unit, pushing a computer on wheels, an entourage of medical students and residents fanning out in his wake. Also on hand are a pharmacist and Dr. Marissa Galicia-Castillo – a geriatrician, professor and head of palliative care at EVMS. Both weigh in on decisions.
The 88-year-old woman at the top of his docket was brought here from a nursing facility. She has a swollen tongue from seizures, which are the newest in a series of ailments that includes dementia and high blood pressure.
She also has a long list of medications, prescribed from a number of different doctors over decades.
“It’s absurd what happens,” Marik says. “They accumulate medications from multiple specialists who only see their part. But we have to be the captain, we have to see the whole patient. No one sees this is an 88-year-old woman with dementia, struggling to take pills – some need to be taken once a day; some, three times. Let’s give her just what she needs.”
He suggests cutting down the medications but turns to Galicia-Castillo: “Would you agree?” he asks with a slight bow in her direction.
“Yes, slash and burn,” she says.
Marik grew up in South Africa, where he was educated and began his work as a critical care doctor. He has served in that capacity in Philadelphia and now at Sentara for well over two decades. He says that in South Africa, when people near the end of their lives, they return to the place they grew up, where their family surrounds them.
“In America, people go to the hospital and die alone.”
Although surveys show 80 percent of people would prefer to die at home, recent studies show that about 70 percent die in hospitals or long-term-care facilities, and 30 percent at home.
“With all the medical technology today, there are too many situations where people’s lives aren’t being improved, but rather they are prolonging death,” Marik says. “If a condition is reversible, that’s one thing, but if it’s not … it can be cruel.”
A CPR attempt, he says, can be a violent, rib-breaking act on a frail, elderly person. A 2013 study in five intensive care units found that critical care doctors thought 11 percent of the patients received care that was “futile,” or without benefit, costing $2.6 million.
Galicia-Castillo says that even when plans are set to reduce aggressive care, sometimes they get derailed with a trip to the hospital. She describes the case of a man who was in the last stage of Parkinson’s disease. He and his wife decided together that he wanted to be in hospice care with as little medical intervention as possible. His wife confided to Galicia-Castillo: “When we get sick, it all goes out the window.”
He somehow ended up in the hospital, where a doctor ordered dialysis, a blood-cleansing procedure they had earlier decided against.
“They get to the hospital and think miracles can happen,” Galicia-Castillo says. “Emotions run high, doctors say we need to do XYZ, and they stop thinking about the goals.”
Still, a discussion at least gives family members something to go by: “Sometimes they have made decisions early. That’s where you find the sweet transition, when people had discussed it at home. ‘Mom said she would never want to be hooked up to machines,’ so they are not making the decision, they’re carrying it out for her.”
Marik continues down the hallway, stopping outside the door of a 39-year-old man whose kidneys are failing and who is experiencing infection from a port implanted for long-term dialysis. A simple prescription for high blood pressure years ago might have kept him from being here.
“This is a tragedy, the incidence of renal failure due to hypertension. It’s pandemic and it’s treatable. It goes to access to health care.”
There are two patients who have overdosed on drugs and alcohol. Their faces are obscured by breathing masks, their soft breathing punctuated by beeping monitors. Not uncommon at all, Marik says: fallout from the stigma of mental illness, the lack of a support system.
These cases, along with a few people in their 40s, 50s and 60s who suffered irreversible damage from sudden, unexplained bleeding in the brain, underscore a need for discussions before age and disease set in.
“Death is inevitable,” Marik says. “How, where, what circumstances are the questions.”
He gestures toward the bevy of young medical students behind him: “Even for these young people – it’s not a nice thing to talk about, but it’s part of life and part of being part of society. People don’t want to think about a situation where they have lost independence and consciousness.”
If you’re curious about whether Marik has such a document, he does. He crafted it a decade ago, and his wife and family members are fully aware of his wishes. If that were not enough, he also included it in a chapter on end-of-life issues in a book about critical care, one of dozens of books and papers he has written during the past few decades.
“I, Paul Marik, being of sound mind and body, do not wish to be resuscitated should my heart cease beating and even if it does not,” the document says. “I do not want a feeding tube inserted into me, unless the tube is big enough to carry a pizza. I want to have pizza regularly – and by ‘regularly,’ I mean at least three times a day.
“I do not wish to be kept alive indefinitely by artificial means; if a reasonable amount of time passes and I fail to ask for at least one of the following, chocolate, ice cream, steak, sex, french fries, potato chips, chocolate, coffee, or hamburger, it should be presumed that I won’t ever get better.
“When such a determination is reached, I hereby instruct my appointed person and attending physicians to pull the plug, reel in the tubes, and call it a day! I would be remiss if I didn’t mention organ donation. I want all my organs donated: my eyes to a blind person, my legs to a ballerina, and my brain … well never mind.”
And while the living will is somewhat tongue in cheek, he has legal documents and his family to back him up.
“When our pets get to a certain point,” he says, “we decide Scruffy has lived long enough. We don’t have long-term-care for pets. At some point people can decide, ‘I don’t want to go to ICU, I don’t need to be intubated.’ We are not killing people when we do that, we are letting nature taking its course.”
Retrieved from: The Virginian Pilot