I like to thank Marianne for this entry,I copied it from her blog. It's a very strong article that you need to read.
A leading doctor has devoted his life to helping the terminally ill–and their families–face their mortality with honesty, dignity, and compassion
By Joni Rodgers
Excerpted from The Best Care Possible by Dr. Ira Byock, published by Avery Books, an imprint of Penguin books (LISA) Inc. Buy the book.
"Tell me about your father."
Ira Byock, MD, director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, NH, waits attentively for the answer, elbows resting on his knees.
Seated across from him on a floral sofa in the quiet conference room at DHMC, 59-year-old Julia Dillard* takes a deep breath and launches into a litany of the dire medical problems besetting her 83-year-old father, who was referred to Dr. Byock's palliative care team after it became clear that his condition was grave. Inoperable aneurysms hide in his brain and aorta. Lymphoma lurks in restless remission. The rusty hinges of his heart stay barely cobbled together after bypass and valve replacement surgeries.
His eyesight is failing; nerves in his legs are slowly dying.
Dr. Byock takes in this clinical laundry list without interrupting. Then he says again, "No, tell me about your father. Tell me about the man he is."
As though his words suddenly release her from the tense, jargon-filled hospital world of worsening symptoms and grim prognoses, Dillard's face softens, and she shares family stories: how her father met her late mother at MIT and always said it was love at first sight, never failing to mention how incredibly gorgeous she and her red hair were. More memories follow: a carousel ride; visits to the public library; his generous, kind presence in his daughter's adult life; his stoicism even now–not complaining or admitting that he's in pain. Finally, her stories stop. But it's clear that she feels this is the right answer: This is who her father is.
In an age of specialists and aggressive medical protocols, people who've reached the end of their lives can get trapped in a frightening and frantic maze of tests and technology. Doctors and the families of the dying may lose sight of the person within the patient and see him as a series of medical battles to be won–until they can't be won any longer. Dr. Byock's mission is to help everyone involved find meaning, dignity, and peace in these final months of life.
Few would argue against the idea that end-of-life care in America needs an overhaul. Patients typically undergo aggressive treatments for the conditions afflicting them, ending their days in a semiconscious haze of pain and pain-killing drugs; often, no one addresses the fact that they're dying. In large part, this is because doctors are taught that their primary goal is to fight disease and injury. "Physician training reinforces a denial of dying, death, and grief and emphasizes combating the disease over helping the patient," Dr. Byock says.
Take pneumonia, he explains. The human body is hardwired with a variety of ways to shut itself down naturally, and pneumonia is one of its least painful exit strategies. It's also one of the most treatable, so doctors rush in to intervene, and each regimen–antibiotics, ventilators, surgery – forces the body of a critically ill patient to find a more painful way to die.
Dr. Byock wants to make that a more thoughtful process. He believes that for each patient, a loving, frank, and compassionate collective of doctors, family members, and, of course, the patient herself should discuss what her prognosis is, what's medically possible, and what trade-offs she may want to make between her remaining time and her quality of life.
Dr. Byock's philosophy has been honed over the 34 years he has spent working in hospice and palliative care and advocating for the rights of end-of-life patients. If we accept death as a normal stage of life, he believes, it goes against both nature and common sense to approach a dying person as merely a series of medical problems to be solved. "Difficult decisions are often made in moments of crisis and based on nonmedical factors, such as a patient's fear, a doctor's ego, or a family's unresolved issues," he says. "Face the fear, set ego aside, and address the problems–that creates a space in which to ask the hard questions, listen to each other with respect, weigh options realistically, and make decisions responsibly."
Thus, the palliative treatment that Dr. Byock has developed for patients facing the end of their lives includes elements of the hospice care it grew from. "Our first priority is to alleviate suffering," he says. But palliative care also means "being honest with patients about their illness, treatment options, and life expectancy. This does not destroy hope," says Dr. Byock. "On the contrary, by communicating fully and honestly, doctors enable people to choose how they want to live their last days and focus their aspirations on things that are achievable, which is the very definition of hope.
End-of-life counseling was derided as "pulling the plug on Grandma" during recent political debates on health care reform, and its practitioners were vilified as "death panels." But the research strongly suggests otherwise. Although palliative care is a relatively new field, having been introduced to US hospitals around 20 years ago, numerous studies of critically ill people receiving hospice care (in which patient comfort is emphasized over treatment of the illness) have found that these patients live weeks or even months longer and feel better, physically and emotionally, than those who receive only conventional medical treatment. The most important study, conducted at Massachusetts General Hospital in Boston, revealed that lung cancer patients who got palliative care in tandem with standard oncological treatment enjoyed a "significantly better quality of life and lower rates of depression," according to lead author Jennifer S. Temel, MD. What's more, those patients lived an average of 2.7 months longer.
Although patients' welfare is Dr. Byock's primary concern, the overstrained health care system would also benefit from adopting his ideas. In 2009, Medicare paid $60 billion for hospital and doctor bills during the last 2 months of patients' lives, and between 20 and 30% of those costs may have had no meaningful impact on either prolonging or improving the patients' lives. Patient-centered care, it has been estimated, would save the system between 30 and 40%, in addition to its many benefits for patients and their loved ones.
Nonetheless, although approximately 5,000 hospice programs are operating in the United States, there are only 73 palliative medicine fellowships. No hospital is eager to advertise itself as a great place to die, but Dr. Byock's high profile, busy speaking schedule, and best-selling books have helped put DHMC on the map, and a special few who have a calling for this important work find their way to him.
"People know a certain style of palliative care is being taught here," says Dr. Byock. "We respond to every facet of each individual patient's well-being. What we're doing is intended to change the world, but we're always feet on the ground, seeing the next patient."
And the concern encompasses the patient's loved ones too: "The patient experiences his death momentarily; the family lives with it permanently," Dr. Byock says. But grief doesn't have to be the family's only response. He credits this insight to his early career in emergency care. "Often people would tell me that the end of a loved one's life had actually been a time of precious value for them and their family," he says. From then on, he decided to try to give every family that opportunity to come together in support of their loved one.
That's why Dr. Byock and his palliative care team offer everything from explaining and advising on treatment options to providing psychological counseling when needed–or just a compassionate ear at any time of the day or night. They can also assist family members in negotiating nonmedical concerns, such as transferring legal obligations, and help both them and the patients gain the perspective to feel a sense of closure and say good-bye.
Dr. Byock's intensely caring, focused attention on every person he treats may seem unique, but his influence touches all DHMC doctors. His team's morning huddles include staff from every department of the hospital–oncologists, social workers, massage therapists–to ensure that everyone treating a terminal patient is aware of and sensitive to all aspects of her condition, frame of mind, and decisions.
Three months after Dr. Byock's first conversation with Dillard, her father decides to decline any further surgery for his cancer, preferring to forgo the debilitating pain so that he can savor the time he has left. But he has been going to physical therapy and attending DHMC exercise programs. His balance has improved, his strength and stamina are growing, and he feels more confident in his body. The end could be a hundred days away. Or 5 years. Or it could be tomorrow. But today – today he is doing well.
Dr. Byock and Dillard sit down for another in their series of talks. He asks her how the story of her father's life ends.
"Well, if we're lucky, an aneurysm would go, and he would die in his sleep."
"That's the pathological ending," Dr. Byock gently interrupts, "for a story in a medical journal. How does the story of your father's remarkable life end for your dad, but also for you and your sister?"
Slowly, Dillard tells him that her father has taped a "do not resuscitate" order behind a portrait of her mother on his bedroom wall–something Dr. Byock needs to know to honor his wishes. And discussing her father's death calmly and sympathetically, before the final crisis, helps Dillard start to come to terms. "He'll be okay," she says, "and so will I."
