Withdrawing Intensive Life-Sustaining Treatment

Recommendations for Compassionate Clinical Management

Journal article

By: Howard Brody

Date: 1997

Source: H. Brody, et al. "Withdrawing Intensive Life-sustaining Treatment: Recommendations for Compassionate Clinical Management." New England Journal of Medicine 336 (1997): 652-657, 1304-1351.

About the Author: Howard Brody obtained both a bachelor's degree in biochemistry and a doctoral degree in philosophy from Michigan State University. His medical degree was earned at Michigan State University College of Human Medicine. He is board-certified in family medicine, and his particular areas of interest include medical ethics and physician-patient communication. Between 1985 and 2000 he was director of the Center for Ethics and Humanities in the Life Sciences at Michigan State University. Brody is a board member of the American Society for Bioethics and Humanities. In addition, he is author of several books and numerous book chapters and scholarly articles regarding medical ethics.

INTRODUCTION

Death, along with the process of dying, has been studied, written about in scholarly, popular, and spiritual works, contemplated by philosophers and clerics, and fought against universally. Medical science and technology have created new means of achieving, sustaining, prolonging, and transforming the quality of life, but have seen less success in preventing death. A few generations ago, death was the expected outcome for individuals who suffered significant trauma or serious infection. Less than half a century ago, a diagnosis of cancer or heart disease was considered a brief prelude to death. Today, technology and medical expertise can frequently prolong life for people with stroke, heart disease, cancer, dementia, chronic obstructive pulmonary disease (COPD), emphysema, pneumonia, AIDS, and a host of other formerly (rapidly) terminal diseases. Much of the time, but certainly not always, the added months or years of life are of high quality and functionality.

End-of-life care is an emerging and growing multidisciplinary specialty within the broader practice of medicine. Although most of this type of care takes place in a hospice setting, it also may occur in hospitals, skilled nursing facilities, nursing homes, and in the home of the dying patient. Palliative care is a central component of end-of-life treatment, although it is used in other situations, such as chronic pain, severe trauma, and burn care treatment, as well. In essence, palliative care involves the elimination or substantial relief of pain or suffering, and the promotion of the highest possible quality of life throughout the dying process. The goal of high quality end-of-life care is the promotion of positive experiences for the patient and family or support system.

Beginning in 1997, with start-up funding provided by the Robert Wood Johnson Foundation, the American Medical Association began an intensive training program, the goal of which was the development and implementation of a comprehensive program of Education on Palliative and End-of-Life Care (EPEC) for physicians. EPEC was designed to broaden the clinical competencies necessary for the provision of high-quality, caring, compassionate, and appropriate care for the dying patient. Since 2000, EPEC has moved beyond the AMA to professional and paraprofessional societies and organizations and has been adopted by a broad spectrum of physical and behavioral health care programs as the educational standard for end-of-life care.

Communication is a key aspect of end-of-life care: the patient must be given honest, understandable information, delivered in a manner that facilitates informed and appropriate decision-making. It is imperative that the patient and family or support system feel they have been given dignity, respect, and a voice throughout the process. It also is important for them to know that everything possible was done to facilitate the highest possible quality of life for the dying patient. An open communication and trust system must exist, in which the palliative care wishes and preferences of the patient can be heard. The physician should engage in a discussion with the patient and the involved care givers/family members, in which the possible treatment options and likely outcomes are discussed, along with the symptoms and disabilities associated with each. The patient is given the opportunity to state what he or she does and does not wish to experience. Health care proxies, advance directives, living wills, and emergency/heroic or life-prolonging options are discussed, the patient's wishes are legally documented, and copies are attached to the medical chart. It is at this point that the patient is given the opportunity to discuss personal preferences regarding the limits of care, the degree of consciousness desired during the final stages of the dying process, where he or she wishes to die, and after-death arrangements. This is also the time to discuss organ and transplant donor options.

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SIGNIFICANCE

When death is a prolonged process, rather than an abrupt occurrence, it is important to carefully choose the attending physician or health care professional. Among the factors important in this selection process are: 1) the experience the individual has with the death and dying process; 2) the setting in which the individual works (home, hospital, skilled nursing facility, nursing home, hospice, etc.) and how this setting matches the desires by the patient; 3) how well the individual understands the process of palliative care and his or her willing to fully and promptly address each symptom as it arises; 4) the familiarity of the individual with agency, program, and community support systems such as home health care, occupational and physical therapy, dietary and nutritional services, etc.; 5) the individual's knowledge of and contacts with the appropriate specialty consultants; and, 6) most importantly, the relationship between the health care professional and the dying person, which must be based on trust and respect.

In deciding on a treatment plan and system of care, it is important to consider the means by which the patient's care will be paid for. In the United States, it is important that the health care team understand the limits and provisions of the patient's health insurance policy (private payment, public payor such as Medicare or Medicaid, catastrophic insurance, long-term care insurance, or no insurance). Quite often, a medical social worker, care manager, or case manager can help the patient and family find the best possible system of care given the individual circumstances, and can help the patient and family members understand and navigate the benefits system.

When deciding among available treatment options, there is sometimes a difficult choice to be made between aggressive therapies and less aggressive therapies or no therapy. Aggressive therapies may prolong life, but often have potentially devastating side effects that compromise quality of life. Less aggressive therapies or no therapy at all may result in greater quality of life and comfort in the time remaining to the patient, although this time may be shorter than if a more aggressive therapy was chosen. It is critical that the patient and family be fully informed of the overall prognosis and not given false or misleading hope of a different outcome. As a patient nears the end of life, it is important that palliative care focus fully on relieving pain and preventing discomfort of any kind. This may be challenging for some medical professionals, since, quite often, they are trained to give lower doses of medication that do not completely alleviate the pain because of fears of addiction.

An essential component of the treatment decision process must be the consideration of spiritual, religious, philosophical, and cultural beliefs and norms of the patient. Those existential beliefs often play into the patient's feelings about advance directives, decisions about resuscitation, artificial nutrition and hydration, and other death-postponing measures.

Another important decision for end-of-life care is the setting in which the patient wishes to spend the last days of life. If it is the preference of patient and family to prepare for death in the intimate familiarity of home, it is critical that the attending physician be sensitive and supportive of that request and make the necessary preparations a part of the palliative care plan.

Organ donation is an option open to most people, even those dying of a prolonged or degenerative illness. In those circumstances, it is typically the corneas, skin, and bone that can be harvested. In the case of an individual who dies suddenly, more organs, including the heart, liver, lungs, and kidneys, as well as corneas, skin, and bone, can usually be donated to save the lives of others. In either situation, the individual may have decided to become an organ donor in advance, and may carry a standard organ donor card. It is best if the individual is able to communicate those wishes in advance to family members, as well as to the health care team. Some of the cultural concerns around organ donation can be easily allayed by the medical social worker or a member of the patient's behavioral health care team. The appearance of the body is not affected, so organ donation will not impact the ability to conduct a traditional funeral. In addition, there is no cost to the donor or family, and organ donation does not occur until after death (or brain death, in the event of trauma or violent death).

Although there is a tendency for the medical profession and the caretaking community to focus on the physical aspects of dying, it is of equal importance to attend to the individual's emotional and psychological needs during the dying process. People nearing the end of life often experience a wide range of emotions, from anger to fear to anxiety to anticipatory grief and bereavement to reactive, and sometimes clinical, depression. A goal of multidisciplinary palliative care is to assist the patient and family in finding meaning in both the living and the dying processes. It is essential to focus equally on all aspects of the individual's living and dying—to address the physical, the emotional, the spiritual, and the social. In addition to the practical aspects of caring for a person who is nearing the end of life, social and cultural beliefs about illness and death will impact all aspects of the process, as will the practicalities of taking care of a dying person. Any of these can place enormous stress on an already fragmented or fragile care or support system. The social work member of the palliative care team can provide professional support and assistance in managing the cascade of emotions and circumstances surrounding the impending death.

Palliative care providers view death as an integral part of life and strive to assist the dying patient and family with identifying, communicating openly about, and meeting physical, spiritual, and social/practical needs. Palliative care teams are multidisciplinary and are typically comprised of medical and nursing specialists and care providers, social workers and behavioral health care providers, physical and occupational therapists, pharmacists, and clergy. Not every discipline is necessarily represented on every palliative care team, as care plans are predicated on the needs of the individual over time. Among the aims of the team is to assist the patient with non-physical concerns, such as the creation of the patient's goals for the dying process, offering counseling, emotional, and spiritual support. The palliative care team also affords 24/7 access, so needs can be promptly and thoroughly met, and questions immediately addressed. The work of the team does not end with the death of the patient. They also offer help, support, and counseling to the bereaved caregivers.

FURTHER RESOURCES

Books

Kuebler, Kim K. End of Life Care: Clinical Practice Guidelines. Philadelphia: W. B. Saunders, 2001.

Web sites

American Family Physician. "Hospice Care in the Nursing Home." 〈http://www.aafp.org/afp/980201ap/keay.html〉 (accessed November 2, 2005).

American Journal of Critical Care. "Development of the American Association of Critical-Care Nurses' Sedation Assessment Scale for Critically Ill Patients." 〈http://ajcc.aacnjournals.org/cgi/content/short/14/6/531〉 (accessed November 2, 2005).

American Psychological Association. "Culturally Diverse Communities and End-of-Life Care." 〈http://www.apa.org/pi/eol/fsculturallydiverse.pdf〉 (accessed November 2, 2005).

MEDSCAPE from WebMD. "Impact of a Proactive Approach to Improve End-of-Life Care in a Medical ICU." 〈http://www.medscape.com/viewarticle/447781〉 (accessed November 2, 2005).

On Our Own Terms—Moyers on Dying. "Final Days: The Dying Experience." 〈http://www.thirteen.org/onourownterms/final/index.html〉 (accessed November 2, 2005).

The Robert Wood Johnson Foundation. "A Record of Accomplishment in End-of-Life Care." http://www.rwjf.org/newsroom/featureDetail.jsp?featureID=886&type=〉 (accessed November 2, 2005).

TransWeb.org. "Non-Heart Beating Organ Donors: A Medical, Legal, and Ethical Overview." 〈http://www.transweb.org/news/calendar/archive/nhbd_text.html〉 (accessed November 2, 2005).