Journal of Gerontological Nursing

Guest Editorial 

Quality in End-of-Life Care

Judith S Parnes, LCSW, CMC

Abstract

We are beyond the graying of America. I am addressing the needs of the "White-Haired Generation," with the phenomenon of older people living longer and longer. This means we'll be facing more medically complex issues resulting in more socially complex problems as older Americans require more care.

Long life with health is everyone's dream. Dying without suffering is everyone's hope. Expiring in one's sleep is everyone's fantasy. We strive for a quality to our living and our lives. We hope for and need to assure a quality in our dying.

As a Long-Term Care Consultant, I am frequently called on to help coordinate and integrate the various systems/hardships frail older adults and their families face. Because we are living longer, and often with chronic medical conditions, programs such as Medicare are seeing a dramatic shift from primarily being an acute hospital program to one that must be able to meet chronic care needs.

The dramatic increase in the number of old-old, those individuals older than age 85, at risk of needing caregiving assistance, continues to grow. In the state of New Jersey, regional ethics committees have formed to offer assistance and recommendations to long-term care facilities with residents facing difficult end-of-life decisions. The average residents in facilities in New Jersey are older than age 80. The need for complex decisions concerning their continuing medical care has become increasingly more difficult.

In 1906, when Alzheimer first recognized the symptoms of a disease that now carries his name, he reported that this type of dementia may not fit the traditional disease model, but instead a threshold on the continuum of aging. If his continuum model is correct, then we might all become severely demented if we live long enough. In light of present technology to prolong life, the long-term care needs of this incompetent population is obvious. Currently four million people have have been diagnosed with Alzheimer's disease in the United States and AARP projects nine million by the year 2040 (AARP, 1997). Dementia care has become a primary concern to the legal and long-term care community.

As part of the Omnibus Reconciliation Act (OBRA), the Patient ScIi Determination Act went into effect in December 1991 (OBRA, 1990). This legislation mandated that all Medicare/Medicaidcertified health care providers educate their patients on their individual rights to medical treatment decisions under state law. Facilities must ask whether a resident has executed an advance directive and must educate the staff and community on advance directive issues. The concept of the advance medical directive is to uphold each person's right to make all health care decisions and to have those decisions respected. However, the significance lies in the ability for this advance medical directive to promote and improve communication of the patients' health care wishes when they are no longer able to express them.

We have reached a level of medical and technological sophistication that has- enabled physicians to extend and prolong life. This degree of technology helps explain why those older than age 85 compose the fastest growing age group in the United States. However, health care for elderly individuals potentially poses an insurmountable problem as the costs of maintaining their health weights disproportionately on society's resources. A concern for this vulnerable population is that any movement toward change in practice standards will fall differentially on them because of their "disposabtlity" and their overconsumption of medical resources. In the United States it is estimated that 12% of the elderly population accounts for more than 50% of health care consumption.

As individuals age, the problem of becoming dependent on sustained medical intervention becomes a reality. Simultaneously,…

We are beyond the graying of America. I am addressing the needs of the "White-Haired Generation," with the phenomenon of older people living longer and longer. This means we'll be facing more medically complex issues resulting in more socially complex problems as older Americans require more care.

Long life with health is everyone's dream. Dying without suffering is everyone's hope. Expiring in one's sleep is everyone's fantasy. We strive for a quality to our living and our lives. We hope for and need to assure a quality in our dying.

As a Long-Term Care Consultant, I am frequently called on to help coordinate and integrate the various systems/hardships frail older adults and their families face. Because we are living longer, and often with chronic medical conditions, programs such as Medicare are seeing a dramatic shift from primarily being an acute hospital program to one that must be able to meet chronic care needs.

The dramatic increase in the number of old-old, those individuals older than age 85, at risk of needing caregiving assistance, continues to grow. In the state of New Jersey, regional ethics committees have formed to offer assistance and recommendations to long-term care facilities with residents facing difficult end-of-life decisions. The average residents in facilities in New Jersey are older than age 80. The need for complex decisions concerning their continuing medical care has become increasingly more difficult.

In 1906, when Alzheimer first recognized the symptoms of a disease that now carries his name, he reported that this type of dementia may not fit the traditional disease model, but instead a threshold on the continuum of aging. If his continuum model is correct, then we might all become severely demented if we live long enough. In light of present technology to prolong life, the long-term care needs of this incompetent population is obvious. Currently four million people have have been diagnosed with Alzheimer's disease in the United States and AARP projects nine million by the year 2040 (AARP, 1997). Dementia care has become a primary concern to the legal and long-term care community.

As part of the Omnibus Reconciliation Act (OBRA), the Patient ScIi Determination Act went into effect in December 1991 (OBRA, 1990). This legislation mandated that all Medicare/Medicaidcertified health care providers educate their patients on their individual rights to medical treatment decisions under state law. Facilities must ask whether a resident has executed an advance directive and must educate the staff and community on advance directive issues. The concept of the advance medical directive is to uphold each person's right to make all health care decisions and to have those decisions respected. However, the significance lies in the ability for this advance medical directive to promote and improve communication of the patients' health care wishes when they are no longer able to express them.

We have reached a level of medical and technological sophistication that has- enabled physicians to extend and prolong life. This degree of technology helps explain why those older than age 85 compose the fastest growing age group in the United States. However, health care for elderly individuals potentially poses an insurmountable problem as the costs of maintaining their health weights disproportionately on society's resources. A concern for this vulnerable population is that any movement toward change in practice standards will fall differentially on them because of their "disposabtlity" and their overconsumption of medical resources. In the United States it is estimated that 12% of the elderly population accounts for more than 50% of health care consumption.

As individuals age, the problem of becoming dependent on sustained medical intervention becomes a reality. Simultaneously, many are fearful of being caught in this web of technology and question whether they will die with dignity unaware of their surroundings and as a "burden to their children."

Americans have been educated to believe there is a cure for everything including dying. With the growing aging population, rising acuity levels, and technological advances, more patients, families, and providers will continue to face difficult quality of life and end-oflife decisions. The greatest challenge will be to educate the public about what modern medicine can realistically accomplish, and to assure that advance directives specifically address issues regarding artificial nutrition and hydration.

As evident in Oregon's enactment of the Death with Dignity Act (Oregon Death with Dignity Act, 1994), society is ready to examine this issue, and allow for terminally ill, competent individuals to seek medical assistance in dying. It is my belief that most individuals with capacity for decision-making would not choose to be kept alive in this last stage of life, often with a feeding tube, if it did not "enhance the quality of their lives" and merely prolonged the dying process.

The biggest challenge facing the long-term care community, the oldold and their families, or those individuals with no one left to speak for them is to assure individual rights are respected and quality services are received. The older adults and their families who I help on a daily basis express those concerns. Even with increased integration of the health care systems and the health care community, the need for an outside advocate to monitor and coordinate services is vital. My goal is to preserve the dignity and quality of life for each client I assist.

REFERENCES

  • American Association of Retired Persons. (1997). Profile of older Americani: AARP fulfillment. Washington, DC: Author
  • Omnibus Budget Reconciliation Act. (1990). Patient Self Determination Act, Pub. L. No. 101-508. Sections 4206 and 4751.
  • Oregon Death with Dignity Act. (1994). Oregon Revised Statute 127.800-127.995 [On-line]. Available: at www.ohd.hr.state. or.us/chs/pas/ors.htm

10.3928/0098-9134-20010201-07

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