Hospice: The Emerging Way to Care for Terminally Ill Patients

By Nancy T. Poblenz and Gwen E. Richard

History and Background

For the past three decades, hospice care has been developing in the United States as a viable medical treatment for terminally ill patients at the end of life. It represents a shift in philosophy from the customary focus of medical treatments, i.e., to cure the patient’s disease. Hospice care acknowledges when a patient is terminally ill and seeks neither to shorten nor to prolong the patient’s life. Instead, the focus shifts from attempting curative treatments to providing a dignified environment of care, with the goal of making the dying patient as comfortable as possible during his or her last months of life and attending to the needs of the patient and his or her loved ones.
A sub-set of the larger area of treatment known as palliative care, hospice care is given to make the dying patient more comfortable by treating the patient’s pain and other symptoms. While palliative care may be offered to any seriously ill patient, hospice care is offered only to a patient with a life expectancy of months, not years. Hospice care is usually offered to patients in their own homes or in hospice centers with a homelike atmosphere; some providers also offer such care in nursing homes or hospitals.
Hospice provides care for the dying patient 24 hours a day, 7 days a week, in a supportive and dignified environment. The provision of medical services is only one aspect of the care offered. Supportive, rather than curative, medical care is given, with the focus on pain management and quality of life. Patients and their loved ones receive emotional support in the hospice setting, along with spiritual and religious support as needed. The hospice team works closely with patients and their loved ones to tailor the experience to their wants and needs and also renders basic assistance with daily living. The goal is to keep the patient as alert and comfortable as possible in a familiar environment, surrounded by family and friends.
The hospice movement gained popularity in the United States in the late 1970’s after originating in England. By 1993, 11 percent of deaths in the U.S. were in hospice, and that percentage increased to 17 percent in 1995. However, in most health care facilities, care of the dying has not been a priority. Most resources go to curative care, outpatient revenue enhancers, and new technologies. Individuals interested in palliative and end-of-life care can be marginalized in an institutional setting.
The interest in hospice care demonstrates a growing recognition that death is part of life and not to be resisted at every turn. Increasingly, health care institutions and providers consider excellence in palliative and end-of-life care as an essential part of quality health care. One measure of the increased acceptance of hospice care as a viable treatment option is the fact that many third-party payors, such as Medicare and private insurers, now extend coverage for hospice care.1
Some health care facilities have recognized the importance of addressing end-of-life care. Many have adopted a philosophy that prolonging the dying process is not in the patient’s best interests and that the extension of life by extraordinary means may violate moral and ethical principles. These same institutions have recognized that withdrawal of treatment does not equal withdrawal of care; in fact, care to ensure the comfort and dignity of a dying patient is as important as the preceding attempts to achieve a cure.
The development of hospice care is closely linked to changes in medicine that have taken place over the past century. In the early 1900’s, the average life expectancy was 50 years, with a high rate of childhood mortality and adults living only into their 60’s. Infectious disease and accidents were the major cause of death, largely because of the absence of antibiotics. Medicine at the time focused on care and comfort, and the sick or injured were usually cared for at home. With the development of modern medical techniques in the last century, the focus of medicine began to shift. Science and technology became paramount. Improvement in sanitation and public health, together with the invention and widespread use of antibiotics and other new therapies, led to increased life expectancy, which by 1995 had increased to 76 years –73 years for men and 79 years for women.
The practical effect of the advanced technology and improved medical therapies was that the health care providers were able to prolong life significantly, and they often aggressively fought death under almost any circumstances. At the same time, and perhaps due at least in part to the improvements in medical treatments, over the past 30 years, we have observed a marked shift in values with regard to death and dying, resulting in almost a denial of death and a notable discomfort in discussing the dying process. The value placed on youth, productivity, and independence increased. In this new paradigm, many in the health care profession viewed death as “the enemy,” even in situations where the patient’s quality of life has exceedingly diminished. Many physicians experienced a sense of failure if the patient died, regardless of the patient’s quality of life. The quantity, rather than the quality, of life became the measure of treatment success.
Modern health care has advanced to the point of providing cures for many serious illnesses, but has struggled to deal with the reality and significance of chronic illness resulting from prolonging the dying process. Fewer than 10 percent of Americans die suddenly and unexpectedly; more than 90 percent die from a protracted illness with differing trajectories (e.g., cancer and other chronic illnesses). Withdrawal of treatment is an issue in intensive care medicine (which usually supports organ systems without necessarily offering a cure) because it is now possible to sustain life for long periods without any hope of recovery.
As medicine has advanced and improved its ability to extend life through extraordinary measures, gaps have appeared between the fears and desires of dying patients. Common fears of terminally ill patients include dying on a machine, dying in discomfort, being a burden to loved ones, and dying alone or in an institution. According to a 1996 Gallup survey, 90 percent of Americans want to die at home.2 Yet deaths in institutions have increased, and the large majority of deaths in the U.S. still occur in hospitals or other medical institutions.
Most deaths could occur at home, but there is a lack of familiarity with and support for those in the dying process. Additionally, many loved ones of the dying do not have the resources necessary to deal with the practical details and issues that arise. Health care providers also lack familiarity with the dying process. For the most part, they are not used to thinking about the trajectory of a patient’s illness and death, and many are not comfortable with pain and symptom control (palliative care).
In many cases, health care providers do not have the training to assess the functional status of a dying patient and, unfortunately, lack communication skills when discussing the ultimate outcome of a terminally ill patient’s disease: death. Providers may also fear – whether justified or not – the legal ramifications of suggesting to families that there is no hope for a cure and of making a referral to hospice care. As recently as 1997, only five of 126 U.S. medical schools required a separate course to educate physicians on care of the dying.3 Without formal training in the care of the dying, many physicians may feel ill-equipped to deal with a dying patient. Thus, it is hardly surprising that the attending physician is uncomfortable and ill-prepared for straightforward conversations regarding care for such a patient. Taking care of terminally ill patients is neither comprehensive nor standardized in this country.
Fortunately, the medical profession has begun to address this situation. The American Medical Association developed the Education for Physicians on End-of-Life Care (EPEC) project to ensure through continuing education that practicing physicians have the knowledge and skills to provide the best possible care to dying patients.4 The curriculum covers key competencies for all doctors, including fundamental skills for pal-liative care, ethical decision-making, symptom management, communication, and psychosocial aspects of care at the end of life. Another example is the approach facilitated by the Institute of Healthcare Improvement (“IHI”) in the Breakthrough Series Collaborative on Improving End-of-Life care. IHI identified the end-of-life field as one in need of quality improvement and implemented a collaborative effort with participation by 47 health care organizations, including hospitals, hospice, home health care agencies, long-term care facilities, Veterans’ Affairs medical centers, and community-based organizations. From July 1997 to July 1998, these organizations worked together to identify areas needing improvement and to identify specific ways to attain the desired goals. This exercise located the areas needing improvement in health care treatment at the end of life and the methods to achieve that improvement. 5
The medical profession has further addressed the issue of bettering end-of-life care through education, as demonstrated in an editorial entitled “Care at the End of Life: Guiding Practice Where There Are No Easy Answers.”6 In announcing a series of articles to be published in subsequent volumes, the editorial writers stated:
Throughout the ages, people have sought a “good death” in which they are physically as comfortable as possible, are treated with compassion and respect, and find closure in their lives. In the United States at the end of the 20th century, this quest remains elusive. Many people fear that they will have unrelieved symptoms, will undergo unwanted life-prolonging interventions, or will be abandoned by their health care providers.7

This editorial then introduces future articles intended to guide physicians in dealing with and providing palliative care to dying patients. The writers acknowledge “serious problems in medical care at the end of life,” including significant pain, poor communication about the patient’s preferences and care, and missed opportunities by physicians to address the concerns and fears of patients and their families.8
Despite the increasing availability and awareness of hospice care, physicians often do not refer patients to hospice or refer them very late in the dying process. The decision to refer a patient to hospice may be fraught for the physician and the patient, as some patients view hospice referral as abandonment. Yet it is gaining more acceptance over time as baby boomers age and are facing not only their parents’ end-of-life issues but their own similar concerns.

Accessing Hospice Care
How do patients or their loved ones access hospice care? Typically, the attending physician will make a referral when he or she has determined that the patient is terminally ill, that the patient has months (as opposed to years) to live, and that the patient and/or his or her loved ones are amenable to or requesting hospice care. In a hospital or other institutional setting, once the attending physician writes an order for hospice,
the facility will generally consult a hospice company.
The social services department at the hospital works with the family and/or the patient to determine any preferences for a specific hospice company or setting (i.e., in the home or at a hospice care facility, which is more homelike and less institutional than a typical health care setting). Additionally, the social services department considers and addresses the issue of financial ability or payor source to ensure a match between the hospice and type of funds or coverage available to the patient. As with all medical services, payment is an issue of great importance to the patients and their families. It is encouraging that Medicare and most private insurance companies now pay for hospice care. Further, patients without financial ability or insurance may be entitled to receive hospice care without charge or at a reduced rate.
Beyond the basic benefits of advance care planning, federal law mandates that patients in institutions that receive Medicare or Medicaid funding be given information about state laws governing advance directives.9 The Patient Self-Determination Act of 1991 also requires institutions to educate staff and community members about the availability of advance directives.10 Finally, the law prohibits facilities from discriminating against patients based on whether they have an advance directive.11
There are many good websites that provide information on hospice in general, as well as specific information
on how to find hospice providers. Al-though this is certainly not an exhaustive list, some of the most informative websites accessed for assistance in writing this article, and which we acknowledge for the information gained for this article, are:

• National Hospice and Palliative Care Organization (“NHPCO”), a non-profit founded in 1978, at www.nhpco.org;
• Caring Connections, a program of NHPCO, at www.caringinfo.org;
• Americans for Better Care of the Dying, whose Board of Directors includes the Director of the Commission on Law and Aging of the American Bar Association, at www.abcd-caring.org;
• Palliative Care Policy Center, formerly known as the Center for Palliative Care Studies, at www.medicaring.org;
• American Academy of Hospice and Palliative Medicine, an association of health care providers founded in 1988 that is working to establish a sub-specialty in hospice and palliative medicine, at www.aahpm.org; and
• Web M.D., which contains a table setting forth criteria for determining when palliative and/or hospice care is appropriate, at www.webmd.com.

Legal Issues
The use of advanced technology, particularly for terminal illnesses, has created a complex array of ethical, moral, and legal issues, including those surrounding hospice treatment. Various legal issues can arise regarding hospice care, with informed consent for hospice treatment as perhaps the most important concern from a legal perspective. Prior to the referral to hospice care, the multidisciplinary care team works with the patient to determine the patient’s wishes – if the patient is competent or has signed an advance directive and/or a power of attorney giving someone else the authority to make his or her medical decisions.
The potential for serious legal issues ensues if the patient is not competent and has no advance directive. For example, the question of how to handle disagreements within the patient’s family can present legal difficulties and may even result in a legal challenge. Family members may have differing levels of understanding relative to the patient’s medical condition or prognosis. Some family members may feel that issues concerning the depletion of the patient’s financial estate may impact the decision to forgo additional medical treatment and begin hospice care. Since advance directives and medical powers of attorney are dealt with in detail elsewhere in this issue, we will not go into detail here other than to point out the potential problems that may arise when such documents are not in place to protect the patient and to ensure that the patient’s wishes can be ascertained and followed.
Many people believe that having an advance directive is a safeguard against unwanted medical treatment. Although living wills are useful, they do not guarantee that physicians and families will know what to do in a medical emergency, that wishes will be honored, or that patients will die with dignity and in comfort. Unfortunately, in the end-of- life setting, many advance directive forms are limited to clear-cut decisions, with no room for the uncertainty surrounding dying. Some forms do not, for instance, include an option for a patient to say that he or she would be willing to undergo a trial on a ventilator for a week before having it removed. To avoid the potential legal conflicts, the directives could be expanded to include more information and more choices that reflect the continuum of serious and eventually fatal illnesses.
Legal implications may also arise from a contentious area of concern, relying on hospice care as a potential and alleged tool to promote requests for physician-assisted death. Although the unease about euthanasia has been tempered by a greater focus on palliative care principles to manage the treatment of patients with terminal and life-threatening illnesses, recent developments in the U.S. regarding end-of-life issues may indicate that closer attention will be paid to hospice care in this context.
Payment for hospice treatment can also lead to legal concerns. As mentioned above, Medicare covers hospice care; however, there are eligibility requirements under the statute that the patient must meet in order to qualify.12 The question of these benefits’ availability can pose legal questions, as can eligibility under private health care plans. The last thing a dying patient and/or his or her loved ones needs is the worry of financing such expensive medical treatment, including bills from hospice care. Thus, since the statutes and insurance policy language governing eligibility are often arcane and confusing to laypersons, they may ultimately need legal help in this area.

Conclusion
Of course, end-of-life issues are multi-faceted and involve more than just the patient. Challenges include medical, emotional, and financial issues, often accompanied by the stress of shifting roles of the caregivers (e.g., as their parents age and decline, many baby boomers go from being the child to the decision-maker and see their once-strong parents revert to a more dependent role). Hospice care can help to ease the burdens and the transition, and it can provide support for all in the complex yet inevitable process of death.

Nancy T. Poblenz has been practicing law since 1988 and has been a Litigation Director for CHRISTUS Health since July of 2002. She holds a Bachelor of Science degree in nursing from the University of Texas and a doctorate in Dental Surgery from Baylor College of Dentistry, in addition to her law degree from the University of Houston Law Center. Poblenz currently serves on the board of the Greater Houston Society of Healthcare Risk Management. Any opinions expressed in this article are solely the opinions of the authors and not of CHRISTUS Health.

Gwen E. Richard is a solo practitioner who has been practicing law since 1989. She is board-certified in Personal Injury Trial Law by the Texas Board of Legal Specialization and in Civil Trial Advocacy by the National Board of Trial Advocacy, and she is a member of the American Board of Trial Advocates. Richard was president of the Houston Trial Lawyers Association in 2002-2003. She is a Fellow of the Houston Bar Foundation and serves on the Houston Bar Foundation Board and the editorial eoard of The Houston Lawyer.

Endnotes
1. See generally, 42 U.S.C.A., Chapter 7. 2. Hospice Medicaid Education Project Executive Summary, prepared by Health Council of South Florida, Inc., for the Hospice Foundation of America, Inc., January 17, 2002, (sponsored by the State of Florida, Department of Health, the Hospice Foundation of America, Inc., and the Health Council of South Florida, Inc.). 3. “Competent Care of the Dying Instead of Physician-Assisted Suicide,” Foley, K.M., New Engl. J. Med. 336:53-58, (Jan. 2, 1997). 4. See www.epec.net/EPEC/webpages/index.cfm; see generally, www.ascofoundation.org. 5. Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians, by J. Lynn, J. Lynch Schuster, and A. Kabcenell, Oxford University Press, 2000. 6. Annals of Internal Medicine 1999; 130: 9: 772, 4 May 1999. 7. Id. 8. Id. 9. The Patient Self-Determination Act of 1991, 42 U.S.C.A. $$1395cc, 1396a. 10. Id. 11. Id. 12. 42 C.F.R. $$418.20 and 418.22.

Text is punctuated without italics.

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