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By Julie Crawshaw
Despite increasing publicity surrounding end-of-life care, a recent report says little has been done to alleviate serious end-of-life problems that will undoubtedly magnify as more Americans enter old age and approach death.
The panel that prepared the report, sponsored by the Institute of Medicine and the National Cancer Advisory Board, called for reorganizing virtually the entire US health care system to provide uninterrupted appropriate care for those dying from cancer.
The report recommends that the Centers for Medicare and Medicaid Services (CMS-formerly the Health Care Finance Administration) change reimbursement methods to expand payments for palliative care, including reimbursing physicians and caregivers for time spent meeting with pain experts, psychologists, and family members to organize pain relief.
Though this report focused on the plight of cancer patients, the situation isn’t any better for those suffering from other terminal illnesses. Pain relief and other palliative care measures are too often elusive across the board, according to John G. Weg, MD, FCCP, professor of internal medicine, pulmonary and critical care medicine at University of Michigan Medical Center in Ann Arbor, Mich.
Weg, who has worked on end-of-life care issues for more than 30 years, says it simply isn’t reasonable to put patients in intensive care when there’s nothing left that can cure them unless there is a specific intercurrent problem that can be reversed. He says he feels strongly that it’s critical to recognize when there is no longer a treatment that is likely to do any good.
"Telling patients I can’t cure you’ isn’t the same as telling them you can’t help them," Weg observes. "I think every physician has an obligation to make a patient as comfortable as possible. We can almost always control symptoms to a point acceptable to the patient."
Paul A. Selecky, MD, FCCP, director of the pulmonary department and head of the ethics committee at Hoag Memorial Hospital in Newport Beach, Calif, says there is a lack of physician understanding about how to deal with pain. "The vast majority of patients in the US die in a hospital," Selecky says, "yet the SUPPORT [Study to Understand Prognoses and Preferences, Outcomes and Risks of Treatment) study done a few years ago showed that even when using a nurse-clinician as an intervention, patients often die in significant pain."
Don’t Wait for New Drugs; Change the System Now
Joanne Lynn, MD, president of Americans for Better Care of the Dying (ABCD) and director of RAND Center to Improve Care of the Dying, says a big part of the problem is that many physicians are reluctant to discuss end-of-life measures with their patients. Lynn, who served as consultant to the IOM panel, says physicians and caregivers aren’t using the knowledge already available to manage patients’ end-of-life care.
"It isn’t that we have to wait until a new molecular biology determines a better drug," Lynn says. "We have pretty good drugs and decent ways of knowing how to support families and patients. The problem is implementation."
Lynn agrees that the rates of untreated pain are still substantial, as are the numbers of patients who are just a few months from death but don’t realize they have a fatal illness and, thus, can’t plan to bring life to a decent close. "Modern medicine has created the opportunity to live a long time with a bad disease," she says. "But we haven’t built a system to deal with that."
In part, Lynn says, building an effective end-of-life care system means wholeheartedly engaging in quality improvement and reporting out those measures that really work because health care insurers and agencies demand visible proof.
She points out that some kinds of end-of-life care rearrangements are sufficiently substantial and visible to be tested in formal research-for example, she said, organizing 3 cancer centers one way and comparing them to 3 at which no changes were made.
"We could do that this year and know the results in 18 months," Lynn says. "We could put patients suffering from diseases that are eventually going to prove fatal into a comprehensive care system like hospice that covers drugs and in-home services and try to make it a lower per day cost. Two years from now we’d know what works, what kind of good comes at what kind of price," Lynn says. "In 3-5 years, we could build a reliable care system."
Advance Directives: Essential but Mostly Missing
"One wonderful thing about the fact that most of us get to die slowly now is that you can anticipate what’s coming and make some reasonable plans," Lynn says. But although advance directives are a major piece in end-of-life planning, most patients don’t use them. Those who do frequently use very vague, general phrases such as "when it’s clear I’m dying, please don’t put me on machines."
"What is clear’? What is dying’? Does on machines’ include insulin pumps and oxygen tubes or is it just dialysis and ventilators?" Lynn asks. "Every piece of phrasing needs interpretation."
Even when patients know what they want to say, many don’t know how to say it, and physicians must help them to communicate clearly, says David Beyda, MD, medical director of the Phoenix (Ariz) Children’s Hospital pediatric critical care unit. "Simply taking time to sit and listen to a patient is what is needed," he says.
Beyda suggests using videos of physicians who deal with death and dying and talking to patients to educate medical students. "As we become more comfortable with death and the dying process, young physicians use us as role models to guide their behavior," he says.
Lynn observes that as terminal illness progresses, many patients can develop increasingly specific directives but may prefer to spend what time and energy they have with family instead of making end-of-life decisions. "We need to involve the patient preferences and the family’s capabilities and the care system’s capabilities and craft the best support," she says. "And that means a lot of communicating by everyone involved."
Most Errors Occur in Transitions
However, even the best possible advance directives are useless if no one knows what or where they are. Lynn points out that industrial engineers know what health care providers have been slow to learn-that most errors happen during transitions from one team to another.
"A hotshot team in the ICU and a hotshot team in the nursing home who don’t communicate and standardize procedures means advance care and treatment plans will be lost, knowledge about how this particular patient responded to a particular drug will be lost," she says.
Lynn sees the increasingly large population of patients going back and forth between ICU and nursing homes as a set-up for disaster. "How many ICU personnel have even been in the local nursing home, or vice versa?" she asks. "Almost all the communication is between social workers and one-page discharge summaries. It’s a recipe for disaster, and it happens every day."
What’s needed is for someone to assume responsibility for the gap. Now, physicians are responsible only for performance within their own little setting. Lynn says they should be responsible for all the incoming and outgoing patients until the patient is safely ensconced in the next place and all the way from when they were safely ensconced at the last one. "For really sick people, it isn’t enough just to write a comprehensive discharge plan of care," she says.
Indeed, to fill the void, ABCD has developed a set of agendas-promises Lynn says the medical community ought to be able to make to a very sick patient.
1. Provision of evidence-based medical care.
2. No symptoms will be allowed to become overwhelming.
3. Patient ability to plan ahead to avoid emergencies.
4. Patient ability to shape care plan to preferences.
5. There will be no gaps in care from one provider type to another.
6. Family issues will be taken seriously and weighed in the decision making.
7. Care system will be arranged to help patient live fully despite the disease.
"These are all pretty obvious until you realize that the usual care system can’t promise them that," Lynn says. "The average ICU doc can’t make these promises for their care system, because they don’t have any idea what happens when people go to the nursing home or home care."
Hospice: A Solution and a Problem
Selecky concurs that transitions can be perilous but points to the logistical problems involved. He observes that hospice growth, fueled by the fact that hospices are now for-profit enterprises, brings another set of problems: Physicians must use the typical Medicare evaluation and management codes, and there is essentially no physician reimbursement for in-home patient care.
"When the patient goes into hospice care, does the physician continue or turn the patient over to the hospice director?" Selecky asks. "Can you have more than one physician caring for the patient? That seems to be unclear."
Though it will take time to sort out the logistics, ABCD refers physicians to the following list of 20 improvements in end-of-life care that can be made right now. These were written by Don Berwick, MD, of the Institute for HealthCare Improvement in Boston.
• Ask yourself as you see patients, "Would I be surprised if this patient died in the next few months?" For those sick enough to die, prioritize the patient’s concerns-often this is symptom relief, family support, continuity, advance planning, or spirituality.
• To eliminate anxiety and fear, chronically ill patients must understand what is likely to happen. When you see a patient who is sick enough to die, tell the patient, and start counseling and planning around that possibility.
• To understand your patients, ask 1) "What do you hope for, as you live with this condition?" 2) "What do you fear?" 3) "It is usually hard to know when death is close. If you were to die soon, what would be left undone in your life?" and 4) "How are things going for you and your family?" Document and arrange care to meet each patient’s priorities.
• Comprehensive and coordinated care often breaks down when providers don’t have all the facts and plans. The next time you transfer a patient or a colleague covers for you, ask for feedback on how patient information could be more useful or more readily available next time.
• Unsure how to ask a patient about advance directives? Try: "If sometime you can’t speak for yourself, who should speak for you about health care matters?" Follow with: 1) "Does this person know about this responsibility?" 2) "Does he or she know what you want?" 3) "What would you want?" and 4) "Have you written this down?"
• To identify opportunities to share information with patients and caregivers, ask each patient who is sick enough to die: "Tell me what you know about (their disease)." Then: "Tell me what you know about what other people go through with this disease."
• Most internists’ practices have educational handouts on heart failure, COPD, cancer, and other fatal chronic illnesses to give to patients. Read them-if your handouts do not mention prognosis, symptoms, and death, exchange them for ones that do. Considering making "The Handbook for Mortals" and other resources available to your patients.
• Some patients and their families are getting most of their information from the Internet. Log onto a patient-centered Internet site about an eventually fatal chronic illness to learn what is of interest to patients and families.
• Is coordinating the care of your chronically ill patients taking up too much of your time? Call a local advocacy group (American Heart Association, American Cancer Society, etc) for help, or consult with a care management service.
• Discussing and recording advance directives with all your patients may take a while. How many patients older than 85 years do you have? Start making plans with them. Expand to all who are sick enough to die.
• Use each episode in the ICU or emergency room as a "rehearsal." Ask the patient what should happen the next time. Be sure the patient has all necessary drugs at home and knows how to use them. Can you promise prompt relief from dyspnea near death? Tell the patient and family what’s possible and make plans together.
• Ask your next patient who is sick enough to die whether anything happened recently regarding their medical situation for which they were unprepared. Work to anticipate the expectable complications and to have plans in place.
• Since meperidine (Demerol) is almost the only opioid that has toxic metabolites and, thus, is contraindicated for chronic pain, banish meperidine from your prescribing and from the formularies where you work.
• Very sick people will often be most comfortable at home or in nursing homes. Identify programs that are good at home care, send patients to those quality services, and work with them to fill the gaps your patients encounter.
• Feedback on performance guides improvement. Find the routine surveys, administrative data, and electronic records that record symptoms, location of death, unplanned hospital or emergency room use, family satisfaction after the death, and other outcomes. Set up routines to get feedback on performance and improvement every month.
• Except in hospice, most families never hear from their internist after a death. Change that. Make a follow-up phone call or set a visit to console, answer questions, support family caregivers, and affirm the value of the life just recently ended. At least, send a card!
• Working with very sick patients who die is hard on caregivers. Next week-and every week-praise a professional or family caregiver who is doing a good job.
• We can’t really change the routine care without changing Medicare. Contact your congressional representatives to ask for hearings, demonstration programs, research, and innovation to improve the Medicare program.
• Some of our language really does not serve us well. Never say "There’s nothing more to be done," or "Do you want everything done?" Talk instead about the life yet to be lived and what can be done to make it better.
• Patients and families need to be able to rely on their care system. Consider what you can promise on behalf of your care system-pain relief, family support, honest prognosis, enduring commitment in all settings over time, planning for complications and death, and so on. Pick a promise that your patient needs to hear and start working with others to make it possible to make that promise. Quality improvement strategies work.