Photo credit: Kathleen Lavine Business Journal Bev Sloan, CEO of The Denver Hospice, visits Jay and Mary Lou Brink at The Denver Hospice Care Center where Jay Brink was a patient prior to his death on Feb. 2. Hospice care allows patients with terminal illnesses to focus on comfort and family rather than a cure.
Photo Credit : Kathleen Lavine Business Journal The Inpatient Palliative Care Team is comprised of members from Kaiser Permanente and Exempla Saint Joseph Hospital. Clockwise from left: (standing) Dr. Kathleen McGrady of Kaiser Permanente; the Rev. Janet Barriger of Exempla Saint Joseph Hospital; JoAnn Cosentino-Godsil, a Kaiser Permanente nurse; Dr. Tim Collins of Kaiser Permanente; Eileen Warthen, a social worker at Exempla Saint Joseph Hospital; (seated) Dr. Dan Johnson of Kaiser Permanente’s Palliative Care Department, and Virginia Gillispie, a nurse at Kaiser Permanente.
Denver Business Journal - by Bob Mook Photo Credit : Kathleen Lavine Business Journal Dr. Dan Johnson is chief of the Kaiser Permanente Palliative Care Department and director of the Life Quality Institute in Denver. Johnson says that palliative care allows patients to feel more in control as they’re facing the end of their life.
Here's the cover story:
Dying with dignity
Palliative and hospice care gaining acceptance
Denver Business Journal - by Bob Mook
Photo credit: Kathleen Lavine Business Journal
Pat Archer, director of the Exempla Lutheran Hospice at Collier Hospice Center in Wheat Ridge, says the focus of hospice care is comfort, not invasive procedures.
Boulder author Bart Windrum was so unhappy about the care his ailing parents received before they died that he wrote a book about it. And medical professionals in Colorado and around the country — sensing the kind of hurt and frustration that people such as Windrum all-too-commonly experience — are working to improve the way the health care system deals with death.
Shortly after his elderly parents died within 15 months of each other, Windrum self-published “Notes from the Waiting Room” in 2007. In the book, he blames poor communication with medical professionals at Florida hospitals for creating what he calls “preventable stress” in the last days of his parents’ lives — a process he calls “painful” and “needlessly expensive.”
Others agree with Windrum that there’s a better, more-dignified and less-expensive way for Americans to die. His book challenges the medical establishment to identify and address systemic barriers to treating terminally ill patients with compassion.
“Hospitals advertise to us they provide care — and they do it through happy-couple images, billboards and placards in the lobby,” Windrum said. “The problem is they don’t really provide care. What hospitals provide is bodily repair services under the direction of independent physician-scientists. The other thing they provide is nurse monitoring, In other words, they provide treatment and monitoring but not care.”
Recent studies suggest that many concur with Windrum’s assessment. And that’s prompted medical professionals to do some soul-searching.
According to a national study from Brown University researchers, the physical and emotional needs of the dying go unmet.
The study, which was published in the Journal of the American Medical Association in 2004, concluded that too many Americans are receiving inadequate pain medication, emotional support, respect and communication with their physicians.
Among the findings:
• One in four people who died didn’t receive enough pain medication and sometimes received none at all, according to family members.
• One in two patients didn’t receive enough emotional support.
• One in four respondents expressed concern over physician communication and treatment decisions.
• Twenty-one percent complained that the dying person wasn’t always treated with respect.
• One in three respondents said family members didn’t receive enough emotional support.
• Fifteen percent of respondents said they don’t believe the health care providers had enough knowledge about the patient’s medical history to provide the best care.
A growing number of physicians and medical professionals agree that America’s health care system can — and should — do better. So more of them are working to improve end-of-life care so that the final days are more bearable for both the patients and their families.
Dr. Dan Johnson, chief of palliative care for Kaiser Permanente Colorado and director of the Life Quality Institute, said many medical professionals got a wake-up call from a landmark study in the mid-1990s. It revealed that patient families were increasingly displeased with the way the end of life was handled.
The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) showed that, among other things, about half of the patients dying in hospitals experienced moderate to severe pain before death, and many doctors didn’t realize what their patients’ wishes were regarding resuscitation.
It also showed that one-third of family members caring for their loved ones used all or most of their savings to pay for a patient’s end-of-life hospital care.
“I think that study caused a lot of people to say, ‘Whoa. Wait a minute. I’m not so sure that’s how I want to spend the end of my life,’” Johnson said.
The study fueled the rise of the palliative-care movement in the United States and a greater willingness to refer patients to hospice care sooner, Johnson said,
But as more baby boomers accept their mortality, there’s a reason to be optimistic about end-of-life care, said Dr. Jean Kutner, head of the division of general internal medicine at the University of Colorado School of Medicine.
“Things have definitely gotten better even over the last few years,” Kutner said. “The future is looking better than it was.”
Palliative care gains support
Like Johnson, Kutner also cites the growing acceptance of palliative care and hospice-based treatments by the medical community and the public as signs that end-of-life treatment could be improving.
Palliative care aims to reduce disease symptoms rather than cure the disease because sometimes the cure can be harder on the patient or even more life-threatening than the disease itself.
Palliative and hospice care gaining acceptance
Denver Business Journal - by Bob Mook
Photo credit: Kathleen Lavine Business Journal
Pat Archer, director of the Exempla Lutheran Hospice at Collier Hospice Center in Wheat Ridge, says the focus of hospice care is comfort, not invasive procedures.
Boulder author Bart Windrum was so unhappy about the care his ailing parents received before they died that he wrote a book about it. And medical professionals in Colorado and around the country — sensing the kind of hurt and frustration that people such as Windrum all-too-commonly experience — are working to improve the way the health care system deals with death.
Shortly after his elderly parents died within 15 months of each other, Windrum self-published “Notes from the Waiting Room” in 2007. In the book, he blames poor communication with medical professionals at Florida hospitals for creating what he calls “preventable stress” in the last days of his parents’ lives — a process he calls “painful” and “needlessly expensive.”
Others agree with Windrum that there’s a better, more-dignified and less-expensive way for Americans to die. His book challenges the medical establishment to identify and address systemic barriers to treating terminally ill patients with compassion.
“Hospitals advertise to us they provide care — and they do it through happy-couple images, billboards and placards in the lobby,” Windrum said. “The problem is they don’t really provide care. What hospitals provide is bodily repair services under the direction of independent physician-scientists. The other thing they provide is nurse monitoring, In other words, they provide treatment and monitoring but not care.”
Recent studies suggest that many concur with Windrum’s assessment. And that’s prompted medical professionals to do some soul-searching.
According to a national study from Brown University researchers, the physical and emotional needs of the dying go unmet.
The study, which was published in the Journal of the American Medical Association in 2004, concluded that too many Americans are receiving inadequate pain medication, emotional support, respect and communication with their physicians.
Among the findings:
• One in four people who died didn’t receive enough pain medication and sometimes received none at all, according to family members.
• One in two patients didn’t receive enough emotional support.
• One in four respondents expressed concern over physician communication and treatment decisions.
• Twenty-one percent complained that the dying person wasn’t always treated with respect.
• One in three respondents said family members didn’t receive enough emotional support.
• Fifteen percent of respondents said they don’t believe the health care providers had enough knowledge about the patient’s medical history to provide the best care.
A growing number of physicians and medical professionals agree that America’s health care system can — and should — do better. So more of them are working to improve end-of-life care so that the final days are more bearable for both the patients and their families.
Dr. Dan Johnson, chief of palliative care for Kaiser Permanente Colorado and director of the Life Quality Institute, said many medical professionals got a wake-up call from a landmark study in the mid-1990s. It revealed that patient families were increasingly displeased with the way the end of life was handled.
The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) showed that, among other things, about half of the patients dying in hospitals experienced moderate to severe pain before death, and many doctors didn’t realize what their patients’ wishes were regarding resuscitation.
It also showed that one-third of family members caring for their loved ones used all or most of their savings to pay for a patient’s end-of-life hospital care.
“I think that study caused a lot of people to say, ‘Whoa. Wait a minute. I’m not so sure that’s how I want to spend the end of my life,’” Johnson said.
The study fueled the rise of the palliative-care movement in the United States and a greater willingness to refer patients to hospice care sooner, Johnson said,
But as more baby boomers accept their mortality, there’s a reason to be optimistic about end-of-life care, said Dr. Jean Kutner, head of the division of general internal medicine at the University of Colorado School of Medicine.
“Things have definitely gotten better even over the last few years,” Kutner said. “The future is looking better than it was.”
Palliative care gains support
Like Johnson, Kutner also cites the growing acceptance of palliative care and hospice-based treatments by the medical community and the public as signs that end-of-life treatment could be improving.
Palliative care aims to reduce disease symptoms rather than cure the disease because sometimes the cure can be harder on the patient or even more life-threatening than the disease itself.
Here's a column by Bev which editors apologized for trimming, as they ran out of space:
Caring from a distance
Denver Business Journal - by Bev Sloan Special to the Business Journal
Caring from a distance
Denver Business Journal - by Bev Sloan Special to the Business Journal
If you live in Denver — the baby boomer capital of the United States — chances are you’re facing the challenge of caring for an aging parent or other loved one who lives far away.
Denver’s baby boomer population is 33 percent vs. the national average of 27 percent. And when you consider there are 7 million Americans who live more than 300 miles away from an ailing, vulnerable loved one, chances are, you’re a member of the “sandwich generation.”
Here are some tips that may help ease the path of caring for your loved one, particularly if they live elsewhere:
• Plan ahead before a crisis arises. Assess financial resources. Set up health care and transportation options. Get important documents in place such as a will, power of attorney and advance directives. Five Wishes is an easy-to-use legal document that lets you and your loved ones plan how they want to be cared for in the event of serious illness. The Five Wishes booklet is available at most hospices or through the nonprofit Aging with Dignity at www.fivewishes.org.
• Include family. Hold a family meeting with parents, siblings and others involved in their care. Discuss what your parents can do independently and who will carry out the rest. Maybe one sibling will be in charge of seeing that the right assistance is provided, while another provides financial support.
• Get contact information. Gather phone numbers and addresses of your parents’ doctors, financial advisers, insurance agents, attorney, neighbors and friends — even service people such as plumbers and lawn mowers whom you may need to contact.
• Create a file. Keep your loved one’s medical history and medication record in one place. There are websites, such as Google Health at www.google.com/health, where you can store such records electronically.
• Hire a financial planner. Meet with a financial planner to provide guidance for financial decisions, including assessing financial resources. Your employer may have an Employee Assistance Program that provides such services for free or a nominal charge. The planner can help at tax time and with bill paying, or can refer you to reputable sources.
• Automate. Set up online banking and automate as much as possible income deposits and bill paying.
• Hire help. Understandably your parents may be reluctant to give up tasks they’ve always done, but try to convince them that they’ll be able to stay in their home much longer if they hire people to mow the yard, clean the house and do home maintenance.
• Care for yourself. Long-distance caregiving often involves frequent travel and constant worry and can be emotionally and physically draining. If you don’t take care of yourself first, you won’t be able to help your parent.
Bev Sloan is president and CEO of The Denver Hospice. She can be reached at 303-398-6204 or bsloan@denverhospice.org.
Here's interview with Bev on hospice and the West:
Colorado and the West most accepting of hospice care
Denver Business Journal - by Bob Mook
Contrary to popular belief, hospice isn’t just where a patient goes when nothing else can be done for them. Rather, it’s a treatment method that may be more appropriate for the patient, according to the Hospice Foundation of America.
Hospice care is designed to enable terminal patients to focus on their own comfort and quality of life rather than a cure, so that they may live their final days comfortably and pain-free.
Colorado was an “early adopter” of hospice care in the United States — establishing the fourth and fifth hospice care centers in the country in the late 1970s, said Bev Sloan, president and CEO of The Denver Hospice. Medicare started paying for hospice care in 1982.
Sloan said Colorado and the West in general are among the highest users of the fast-growing hospice concept, which she attributes to the state’s high education level and progressive environment.
While the number of hospice facilities has grown dramatically in the last 20 years, Sloan believes that even more people will come to recognize the value of hospice as baby boomers face their own mortality.
She predicts that hospice care will be in the middle of the debate on health care reform in the next few years.
“We know the older people get, the more things fall apart in the health care system,” Sloan said, adding that hospitals often are poorly equipped to deal with people at the end of life. “Hospitals are places for good acute care, but not end-of-life care.”
Sloan cited a recent study from Duke University that shows hospice care is more cost-effective than what patients get at hospitals in their final days.
She said she’s concerned that too many patient families and doctors hold onto patients too long in hopes that the recovery of a loved one might be around the corner.
“The average length of a hospice stay is much too short,” Sloan said, noting that even in Colorado, the average hospice stay is only two weeks, when patients are allowed under Medicare regulations to enter hospice during what’s considered to be the last six months of life. “The medical profession still refers [patients to hospice care] too late.”
Health care professionals say one reason people spend little time in hospice is because hospitals want to keep them longer to receive full Medicare reimbursement.
The other might have to do with the fear of the word hospice, which Sloan attributes to Americans’ general aversion to death.
But those who use hospice or palliative care as a way to deal with terminal illness are generally satisfied with the results, Sloan said.
“We’ve never had a family said we wish we had this care later,” she said. “Choosing hospice doesn’t mean giving up on life. It is a different mind-set.”
Sloan agreed the emphasis of technology to prolong life doesn’t produce the best outcomes in health care.
“It may or may not prolong the quality of life and it’s extraordinarily costly,” she said. “Hospice is a more respectful option.”
Here's interview with Dan Johnson of LQI on growth of palliative care:
Palliative care bridges the gap between acute care and hospice
Palliative care bridges the gap between acute care and hospice
Palliative care is rapidly building momentum in Colorado and nationwide.
An approach that uses a multidisciplinary team — including medical professionals, a chaplain and a social worker — to treat people with chronic illness, palliative care programs are offered in 55 percent of U.S. hospitals with more than 100 beds.
The movement was launched after a 1994 study showed most people were unhappy with the way the medical profession dealt with patients who were near the end of life.
“The fact is, people are feeling out of control,” said Dr. Dan Johnson, director of Denver’s Life Quality Institute. “That’s the No. 1 reason people sought physician-assisted suicide in Oregon. We aren’t always doing a good job attending to the psychosocial needs of people as they’re facing the end of their life.”
But by integrating palliative care into health care, Johnson believes that patients and their families have more control and are able to make medical decisions based on what they want as opposed to what the diagnosis calls for.
“We don’t know all the answers, and we need to create a system that honors a person with an illness, not a body with a disease,” he said.
Palliative care focuses on reducing disease symptoms rather than on curing the disease (where the cure can be worse or more life-threatening than the disease).
Johnson stressed that seeking palliative care doesn’t necessarily mean a reduction of care.
“One person may decide to spend the last moments of life pain-free at a garden at home,” he said. “Or someone else may decide that every breath of life is precious, and they want to die in a hospital. We’d better be careful not to dictate to people how we die.”
Johnson said palliative care does a good job facilitating communication among patients, their families and medical personnel about how the patients are treated.
He said there’s no evidence that palliative care lowers the costs of health care. But he’s adamant that it improves the quality of care.
“We know at worst, it’s cost-neutral and probably responsible for cost reductions,” Johnson said. “We know that patients and families, when given the choice, don’t always choose the most expensive options. There are no indications [palliative care] shortens or lengthens life. Rather, it focuses on what your life looks like while you’re alive.”
Dr. Jean Kutner, head of the division of general internal medicine at the University of Colorado Denver School of Medicine, said the whole idea with palliative care is to “provide comfort at the end of illness and care that’s consistent with [the patient’s] goals and values.”
“For some people, that might mean getting every possible therapy and spending their last days in the ICU,” Kutner said.
In Colorado, the Life Quality Institute has provided more than 80,000 hours of palliative and end-of-life education to more than 2,000 Colorado medical students since it was established in 2003.
The Life Quality Institute is a collaboration between The Denver Hospice, the University of Colorado Health Science Center and other professional organizations.
The institute was created after The Denver Hospice received a $500,000 grant.
Johnson said the organization is teaching future doctors a more holistic approach to dealing with people who are facing death.
“Every doctor knows how to assist with birth, but nobody knows how to help somebody die,” he said.
Kutner noted that Colorado has one of the highest percentages of palliative care-certified physicians in the country.
But despite the growing popularity of palliative care, Johnson said, there’s “no such thing as a palliative care Medicare benefit.”
“But Medicare will allow a nurse practitioner or physician trained in palliative care to bill them for the services they may provide,” he said.
Kutner said Medicare also won’t cover the cost of palliative care therapies performed at a patient’s home.
But Johnson said a breakthrough may come if JCAHO (Joint Commission on Accreditation of Healthcare Organizations) designates palliative care as a standard in coming years.
“If that happens, then we’ll see great changes, because it will become a requirement,” he said.
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