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Doctors' Recognition of Approaching Death in Terminal Patients Seen Unreliable
Terminal Patients Prefer Less Costly In-Home End-of-Life Care
Understanding Hospice: An Underutilized Option for Life's Final Chapter
Understanding Hospice: An Underutilized Option for Life's Final Chapter
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October 23, 2007 - November 2007
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Understanding Hospice - An Underutilized Option for Life's Final Chapter
By Gail Gazelle, MD
New England Journal of Medicine, July 26, 2007
It was Mr. G.'s third exacerbation of congestive heart failure in the past 6 months. Eighty-three years old, he had New York Heart Association class IV heart failure, end-stage coronary artery disease, and insulin-dependent diabetes. Although he had never wanted to be put on a ventilator, this time his shortness of breath was so terrifying that he felt he had no choice. After having a good response to diuresis, he was successfully extubated and transferred out of the coronary care unit.
Two days later, a hospitalist suggested to Mr. G. and his wife that given his advanced disease, he should consider going home and receiving hospice care there. Sensing the couple's fear, she reassured them that death was not imminent and that members of the hospice staff would work to ensure the best possible quality of life. Relieved, Mr. G. acknowledged that he would prefer to avoid rehospitalization.
Introduced in the United States as a grassroots movement more than 30 years ago and added as a Medicare entitlement in 1983, hospice care is now considered part of mainstream medicine, as evidenced by growing patient enrollment and Medicare expenditures (see table). In 2005, more than 1.2 million Americans received hospice care, and between 2000 and 2004, the percentage of Medicare decedents that had been enrolled in hospice programs increased by almost 50%. But despite its increased use, many aspects of hospice care are still misunderstood by both physicians and patients.
For instance, many would not consider Mr. G. to be a candidate for hospice care. He did not have cancer, and his death was probably months, not days, away. The fact is, however, that slightly less than half of hospice patients have terminal cancer; nearly 40% of hospice admissions are for end-stage cardiac disease, end-stage dementia, debility, pulmonary disease, and stroke.1
Patients and clinicians may also not realize that hospice care at home is free. Medicare is the primary payer for hospice care in approximately 80% of cases, with care most often provided in the patient's home. Commercial insurers also provide hospice benefits, but the specifics of coverage vary. Under Medicare, most expenses related to the terminal diagnosis are paid in full, including all medication and equipment and all visits by hospice nurses and home health aides. (Expenses related to other diagnoses remain covered by the patient's primary insurance provider.) Other hallmark hospice services include intensive emotional and spiritual counseling, 24-hour crisis management, and bereavement support for at least 1 year after the patient's death.
Hospice care can successfully address the critical end-of-life concerns that have been identified in numerous studies: dying with dignity, dying at home and without unnecessary pain, and reducing the burden placed on family caregivers.2,3,4 Evaluation studies reveal consistently high family satisfaction, with 98% of family members willing to recommend hospice care to others in need.1 And the extensive expertise of physicians specializing in hospice and palliative medicine was recognized in 2006, when the field was accredited as a fully independent medical subspecialty.
Despite these benefits and the general understanding by clinicians that at least 6 months of care are provided, the median length of hospice service is only 26 days, with one third of patients referred to hospice care during the last week of life.1 Factors contributing to late referral include application of a curative model to end-stage incurable illnesses; Medicare's per diem hospice reimbursement, which precludes costly, aggressive therapies; and the mistaken view that patients must have a do-not-resuscitate order.
However, the most important factors in delayed referrals appear to relate to physician attitudes. In its first position paper on the topic of cancer and dying, the American Society of Clinical Oncology acknowledged that many oncologists and other physicians regard the death of a patient as a professional failure.5 Many also fear that they will destroy their patients' hope, which physicians may believe lies only in efforts to increase the quantity rather than quality of life. Furthermore, physicians receive little training in the compassionate discussion of bad news. But perhaps the most critical factor is that physicians view hospice care as something reserved for the imminently dying instead of as a service designed to help people live as well as possible in the face of advanced incurable disease.
To determine eligibility, the attending physician and hospice medical director must certify that to the best of their judgment, the patient is more likely than not to die within 6 months. Responsibility for determining ongoing eligibility rests with the director. To assist physicians in prognosticating, Medicare provides broad guidelines for many medical conditions (see box), but these guidelines do not represent hard-and-fast requirements. Coexisting conditions or a particularly rapid functional decline can outweigh strict adherence to written requirements.
After enrollment, a plan of care is developed in accordance with the needs and wishes of the patient and family, often tempered by the presence or absence of caregivers to participate in day-to-day care. The primary goal is to ensure that pain and such symptoms as insomnia, dyspnea, depression, constipation, agitation, nausea, and emotional and spiritual distress are aggressively addressed. Most clinical care is provided by a hospice nurse, and the vast majority of patients are not seen by a physician. Mr. G.'s plan of care included continuing high-dose furosemide, adding low-dose lorazepam for the anxiety that typically accompanies shortness of breath, and initiating low-dose liquid opioids, a mainstay in the management of dyspnea.
To address Mr. G.'s nonmedical needs, a home health aide provided assistance with personal hygiene and dressing for an hour each day, 5 days a week. The hospice social worker offered to have a volunteer shop for groceries and provide companionship. The social worker also talked with the family and identified the need to address Mr. G.'s anxiety and his wife's fears about the future. Noting that Mr. G. had concerns about whether God was punishing him for past acts, she encouraged visits by the hospice chaplain.
Hospice emphasizes an interdisciplinary approach to care. In most cases, at least once every other week, the hospice team — nurses, social workers, a pastoral counselor, the bereavement coordinator, and the medical director — meet to discuss the needs of the patient and family. In the interim, nurses call attending physicians with their recommendations.
One serious challenge in hospice care is that attending physicians typically receive little to no training in the use of medications for pain and symptom management and thus rely on a presumed level of expertise on the part of the hospice nurse. Given the current nursing shortage, however, such an assumption of competency may or may not be well founded. Attending physicians should routinely evaluate recommendations and should have a low threshold for reviewing cases with the hospice medical director.
As a patient's disease progresses, the hospice plan shifts to accommodate decreasing independence, alterations in symptoms, and changing psychosocial needs. In Mr. G.'s case, the realization that his symptoms could be managed at home lessened his anxiety, which in turn decreased episodes of chest pain. Flash pulmonary edema occurred less frequently; during one such episode, he received intravenous furosemide in his home, since he wanted to avoid further hospitalizations. During 4 months of hospice care, Mr. G.'s condition gradually deteriorated, with increasing weakness, dyspnea, and cardiac cachexia. Near the end, his family and friends gathered, and he died peacefully with his wife and nurse at his side. Despite his family's grief, they expressed their appreciation that Mr. G. had maintained a reasonably high quality of life and had died in his home as he had wished.
With the growing number of baby boomers seeking more control over all aspects of their health care, the use of hospice care will probably continue to increase. It is especially important, therefore, that physicians become more familiar with what hospice care offers and work to overcome barriers in talking frankly with patients about what lies ahead.
Source Information
Dr. Gazelle is a member of the Division of General Medicine and Primary Care at Brigham and Women's Hospital and president of MD Can Help — both in Boston.
An interview with Dr. Timothy Quill, director of the Center for Palliative Care and Clinical Ethics at the University of Rochester, can be heard at www.nejm.org.
References
- NHCPO's facts and figures — 2005 findings. Alexandria, VA: National Hospice
and Palliative Care Organization, 2006. (Accessed July 6, 2007, at http://nhpco.org/files/public/2005-facts-and-figures.pdf.)
- Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients'
perspectives. JAMA 1999;281:163-168. [Free Full Text]
- Emanuel LL, Alpert HR, Baldwin DC, Emanuel EJ. What terminally ill patients
care about: toward a validated construct of patients' perspectives. J Palliat
Med 2000;3:419-431. [CrossRef][Medline]
- Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA.
In search of a good death: observations of patients, families, and providers.
Ann Intern Med 2000;132:825-832. [Free Full Text]
- American Society of Clinical Oncology. Cancer care during the last phase of
life. J Clin Oncol 1998;16:1986-1996. [Abstract]
This article has been cited by other articles:
- (2007). A Call for Change in Hospice Reimbursement. JWatch Neurology 2007: 5-5 [Full Text]
Credit: http://content.nejm.org/cgi/content/full/357/4/321
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A Heartfelt Appeal for a Graceful Exit
By Jane E. Brody
February 5, 2008
After reading the Personal Health column on Nov. 27 on preventing geriatric suicide, Gloria C. Phares, a 93-year-old retired teacher in Missouri, wrote:
“I was healthy until 90, and then Boom! Atrial fibrillation; deaf, can’t enjoy music or hear a voice unless 10 inches from my ear; fell, fractured my thigh and am now a cripple; had a slight stroke the day after my beloved husband died after 61 years of marriage.
“I’ve lived a happy life, but from here on out it’s all downhill. Is there any point in my living any longer? I’m not living — just existing. I very much want to die, but our society doesn’t let me. Oh for a pill to ease myself out and end my pain, pain, pain.”
As this column said in November, untreated depression is a common cause of suicide in older people, though by no means the only one. But when I spoke to Mrs. Phares’s son Michael, with her permission, he assured me that she was not depressed, just tired of living what she views as a pointless and painful existence. He suggested to her, not entirely in jest, that she move to Oregon or the Netherlands, where physician-assisted suicide is legal.
Modern medicine can keep people alive into their 9th and 10th decades, when in years past they would have succumbed to any number of conditions. Now a small but growing number of these people are asking why. What is the point of living so long if you can no longer enjoy living? What is the point of living until your mind turns to marshmallow and you are reduced to an existence that is less than human?
Assisted suicide raises troubling ethical questions, which is why the laws in Oregon and the Netherlands are filled with safeguards to prevent its indiscriminate use. But Mrs. Phares’s question is troubling, too, and it cannot be lightly dismissed.
When ‘Every Day Is Bad’
My high school biology teacher was 94 when I visited him at an assisted-living center. Though physically independent and medically well, he was not happy. Gesturing toward a dining room of people in various stages of physical and mental debility, he said: “I feel like my mind is going, and I don’t want to end up like them. While I still can, I want to be able to check myself out. Will you help me?”
I said I empathized with his request. But because I was in no position to honor it, I suggested that he speak with his children, who should agree with any exit strategy he contemplated and, perhaps, be able to expedite it. Why shouldn’t an emotionally sound, thoughtful person be able to call it quits when life has dragged on too long? When there is nothing to gain and much to lose from an ongoing existence?
I thought about my mother, who died at 49, a year after learning she had advanced ovarian cancer. When it was clear that no therapy could save her, when her life had been reduced to pointless treatments and prolonged hospital stays, she twice tried to end it, first by slitting her wrists and later by drinking rubbing alcohol.
Twice, to my 16-year-old thinking, her life was saved. But when I grew up, I asked myself, saved for what? More misery, an increasingly bleak future with no hope for recovery? If I were in a similar position, would I want to be rescued?
I can now understand the thinking of Betty Rollin’s mother, Ida, who, at 75, also had advanced ovarian cancer. As Ms. Rollin told it in “Last Wish” (Linden, 1985), Ida was a loving, funny, delightful human being. She was also a no-nonsense, take-charge person. So when Ida’s life had become a series of debilitating medical crises — “Every day is bad,” she said — she asked her daughter to help her end it.
“Mother,” Ms. Rollin responded, “is that really what you want — to die?”
“Of course I want to die,” Ida said. “Next to the happiness of my children, I want to die more than anything in the world.”
And so Ms. Rollin embarked on a quest to find out how her mother’s wish might be granted. It took courage and perseverance. But most of all, it took love, enormous love and respect for a woman who knew what she wanted “more than anything in the world.” With the right prescription finally amassed, Ida died peacefully by her own hand.
When very sick patients receive symptom-relieving medical, social and emotional support now provided by palliative and hospice care, few persist in wanting to die before nature takes its course. But even if such care had been available for Ida and my mother, it would not have restored either woman to a life she considered worth living.
Finding Dignity and Peace
Studies of dying patients who seek a hastened death have shown that their reasons often go beyond physical ones like intractable pain or emotional ones like feeling hopeless. Often the reasons are existential — recognition that their lives have lost all meaning, concern that they have become an undue burden to their loved ones, desire to avoid a protracted death or distress about the time and money being “wasted” in prolonging their lives, which are destined to end soon, anyway.
Dr. Timothy E. Quill of the University of Rochester School of Medicine says he believes that there is an occasional need for an assisted death. As he wrote in May 2004 in The New England Journal of Medicine:
“I recently helped my father to die. He was an engineer, independent, always on the go and in charge. He began to deteriorate rapidly from an ill-defined dementing illness, and his confusion and intermittent agitation did not respond to the standard treatments that were tried. He had made his wishes clear about avoiding any prolongation of his dying, but now he had lost the capacity to make decisions for himself.
“He was unable to sleep or relax at night, despite trials of neuroleptics, antidepressants, and antianxiety agents. How were we to honor his wishes and values and help him to find dignity and peace in the last phase of his life?
“We elected to try low-dose Phenobarbital. He awakened periodically to exchange a few words, but he almost completely stopped eating and drinking. He died peacefully five days later.”
Dr. Quill wrote that knowing last-resort options are available “is very important to those who fear being trapped in a life filled with suffering without the prospect of a timely escape.”
“Those who know that escape is possible,” he continued, “often feel free to expend their energy on other more important matters, and most will not need that escape if they receive adequate palliative care. A few, however, like my father, will end up in conditions of unacceptable suffering.”
I for one have made my wishes clear to my family. When the tortures of a continued existence with no hope of recovery outweigh the benefits of maintaining that existence, I want out. And I hope that those who love me will find a way to make that happen.
Credit: http://www.nytimes.com/
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Doctors' Recognition of Approaching Death in Terminal Patients Seen Unreliable
Reuters Health Information 2007. © 2007 Reuters Ltd.
Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.
By Will Boggs, MD
NEW YORK (Reuters Health) Aug 17 - Physician estimates of survival in terminally ill cancer patients are quite imprecise, especially for patients near death, according to findings published in the August 1st issue of the Journal of Clinical Oncology.
"We spend a lot of time discussing the prognoses of patients in order to tailor palliative therapy to the individual life expectancy," Dr. Stephan Gripp told Reuters Health. "I was especially astonished that we were obviously unable to recognize those persons who died very soon. I previously believed that prognostication would be more difficult and imprecise with longer survival."
Dr. Gripp from the University Hospital Duesseldorf, Germany, and colleagues investigated how survival of palliative cancer patients relates to subjective prediction of survival, objective prognostic factors, and individual psychological coping.
Survival (for less than 1 month, for 1-6 months, and more than 6 months) was appraised correctly by 61.3% of a pool of physicians, 54.9% of experienced radiation oncologists, and 62.7% of tumor board physicians, the authors report.
Errors in prediction were skewed toward optimistic prognosis by pooled physicians and tumor board physicians, but not by experienced radiation oncologists.
Correct assessments of patients who died within 1 month were rare, the investigators say. From 48% to 78% (depending on physician group) of these patients were predicted to survive 1 to 6 months, and 17% to 23% were predicted to survive more than 6 months.
Based on clinical variables, favorable prognostic factors included primary colorectal cancer and breast cancer (relative to other primary tumors), the researchers note, whereas metastatic spread to the brain, Karnofsky performance score below 50%, use of morphine, dyspnea, and elevated white blood cell count conveyed a worse prognosis.
"Do not offer any specific date of death," Dr. Gripp advised. "Considering the potentially devastating consequences, honest communication on prognosis must be vague, emphasizing the enormous uncertainty. Doctors are not necessarily better than other persons in prognostication."
J Clin Oncol 2007;25:3313-3320.
Credit: www.medscape.com
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Terminal Patients Prefer Less Costly In-Home End-of-Life Care
Reuters Health Information 2007. © 2007 Reuters Ltd.
Republication or redistribution of Reuters content, including by framing or similar means, is expressly prohibited without the prior written consent of Reuters. Reuters shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon. Reuters and the Reuters sphere logo are registered trademarks and trademarks of the Reuters group of companies around the world.
By David Douglas
NEW YORK (Reuters Health) Aug 03 - In-home palliative care for terminally ill patients can improve patient satisfaction while reducing medical care costs, researchers report in the July issue of the Journal of the American Geriatric Society. The team says the findings provide "strong evidence for reforming end-of-life care."
The study "supported our goal of enhancing care to chronically ill patients by providing comprehensive, coordinated, and compassionate care by an interdisciplinary team of health care providers," lead investigator Dr. Richard Brumley told Reuters Health.
Dr. Brumley of Kaiser Permanente Hospice and Palliative Care, Downey, California and colleagues note that the "current medical care structure is inadequate in meeting the needs of terminally ill patients and reducing the cost of care at the end of life."
Hospice care, they add, is available through Medicare, but the program is underused and 60% of all deaths take place in hospital.
To examine whether in-home palliative care might be a practical alternative, the researchers studied 298 home-bound terminally ill patients with pulmonary disease, congestive heart failure or cancer who were expected to live no more than a year. All had had at least one hospital or emergency room visit in the previous 12 months.
They were randomized to usual care or to in-home palliative care (along with usual care) delivered by an interdisciplinary team who provided pain and symptom relief, patient and family education, and medical and social support services.
The palliative care group reported significantly greater improvement in satisfaction with care at 30 and 90 days after enrollment and were significantly more likely to die at home than those receiving usual care (71% versus 51%).
In addition, in-home palliative care subjects were significantly less likely to visit the emergency department or be admitted to hospital than those receiving usual care. This resulted in significantly lower costs. In fact, the average cost per day was $95.30 for palliative care patients, less than half of $212.80 per day costs incurred by usual care participants.
"By involving patients and families with discussions about their illness and various treatment options, desires and concerns," concluded Dr. Brumley, "we were able to successfully redirect the focus of care to the home setting, which patients prefer, while reducing dependency on acute, inpatient care."
J Am Geriatr Soc 2007;55:993-1000.
Credit: www.medscape.com
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