Planning in advance for how we want to be cared for as we age should be an ongoing process, and continued until the need for care arises. Health care decisions should be an individuals' right.
Advanced care planning should be an ongoing process in everyone’s life. It’s therefore important to gain a perspective on how America needs to change its thinking about caring for our oldest citizens. The questions we ponder and the answers and solutions we seek will be different for each of us and it is a difficult challenge. In 1843, Soren Kierkegaard, a Danish philosopher and theologian, discussed the difficulty of the challenge when he said, “Life can only be understood backward but it must be lived forward.”
One of the most striking themes of aging is how many decisions there are to be made. Who will take care of us? How much of our lives must we and can we give over to caring for another? How much should be done to prolong life? Finally, how do we rethink and revise our health care and payment system that largely fails to provide care for those nearing the end of life? One that is compassionate, coordinated, affordable, and the best quality possible?
Advanced care planning has been defined as a process of coming to understand, reflect on, discuss and plan for health care decisions using a health care power of attorney and advanced directive. The development of an individual’s right to make their own health care decisions concerning life sustaining treatment is illustrated in the historic case of Karen Ann Quinlan.
In 1975, Karen Ann Quinlan, age twenty-one, collapsed, stopped breathing, and slipped into a coma. She had just arrived home from a party where friends reported that she took prescription drugs and drank alcohol. Doctors were able to save her life, but she suffered severe brain damage and fell into a persistent vegetative state. She required a ventilator and a feeding tube to survive.
Karen’s father, Joseph Quinlan, was appointed her guardian. After several months, he asked doctors to remove both the ventilator and the feeding tube but they refused. He filed a law suit in New Jersey Superior Court, In Re Quinlan. The court denied the father’s request, but the New Jersey Supreme Court, in a landmark legal decision, ruled in favor of the guardian on the basis of a “constitutional right of privacy.” It argued “that this unwritten right…is broad enough to encompass a patient’s decision to decline medical treatment it is broad enough to encompass a woman’s decision to terminate a pregnancy under certain circumstances,” citing Roe v. Wade, the U.S. Supreme Court’s decision that all state and federal laws against abortion violate a “constitutional right to privacy.”
In 1976, supported by the Quinlan decision, California passed the Natural Death Act, which became the first state to legalize advanced directives, allowing a person the ability to control life-ending decisions. By 1986, forty-one states had enacted some form of the advanced directive. Today, every state has an advanced directive, although legal requirements vary from state to state. The Five Wishes is the only advanced care document accepted in every state.
Although Quinlan was removed from mechanical ventilation in 1976, she lived on in a persistent vegetative state for almost a decade until her death from pneumonia in 1985.
Federal Legislation on Advanced Directives
The Federal government, through congressional legislation, passed the Omnibus Budget Reconciliation Act of 1990, which contained The Patient Self-Determination Act (PSDA). The act applied to all states that accepted Medicaid and Medicare reimbursements. It required each participant to develop a written policy concerning advanced directives to be provided to all patents at admission, along with a consultation to discuss the nature of an advanced directive with each patient.
In 2006, Congress directed the Department of Health and Human Services to conduct a study of the PSDA to determine how well it was working. The study concluded that it did not increase the percentage of patients with an advanced directive; that hospital staff was either unwilling or unable to provide useful education to the admitting patient; and that patients were generally too distracted by the urgency of being in the hospital setting to concentrate on the document. Further, the PSDA experience was consistent with the failure of patients to understand and execute the advanced directive. The conclusion was that even when patients had an advance directive, it did not accurately reflect the patient’s health-care wants or needs.
The Winds of Change
The developing definition of advance care planning is a broader, less legally focused concept. It encompasses not only the health-care power of attorney and advanced directive, but also the need to have an ongoing discussion among family members and care providers about the effect of serious illness. It recognizes the financial concerns of a long illness. It opens the possibility of considering the patients spiritual questions and fears. A nationally recognized model of the new thinking has been developed by the Gundersen Lutheran Medical Foundation.
The Gundersen Lutheran Medical Foundation in LaCross, Wisconsin, is one of the leaders in developing the model for assessing and planning advance care strategies. Its program, “Respecting Choices,” has been nationally recognized as a successful and forward-thinking advanced care plan system. The program is an advanced care planning process of communication that helps individuals understand their choices for future health care, reflect on personal goals, values, religious, or cultural beliefs, and talk to physicians, healthcare agents, and other loved ones as needed.
The process of communication needs to be individualized, based on a person’s state of health, and revisited at appropriate times. The stages of planning have three distinct and focused steps.
Step One. This step is appropriate for all adults, but should be initiated as a component of routine health care for those between the ages of fifty-five and sixty-five. The goal is to motivate individuals to learn about advanced care planning, select a healthcare decision maker, and complete an advanced directive that identities the basic goals for life-sustaining treatment in the event of a severe neurologic illness from which the individual is unlikely to recover.
The faces of our changing health care have many expressions. At the same time that individuals are learning to develop more advanced care plans, the health community is challenging its current way of thinking about end-of-life issues. A concern about the present care model for end of life medical treatment, and the possible new way of thinking is being driven by Atul Gawande’s book, Being Mortal: Medicine and What Matters in the End, and a 2014 report issued by the Institute of Medicine, “Dying in America: Improving Quality and Honoring Individual Preference Near the end of Life.”
Advanced Care Planning: An Ongoing Process was published in the Spring 2015 edition of the CSA Journal.
Blog posting provided by Society of Certified Senior Advisors
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In his book, Gawande discusses his perception of the problem when he states:
“You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people, and denied them the basic comforts they most need.”
The American Bar Association, Commission on Law and Aging, studied both Gawande’s book and the Institute’s report, and determined that not only were the concepts presented important to the end-of-life quality of care and the process of aging, but also represented human right issues. The Commission developed and adopted a five-element resolution that will be presented into the legislative process to promote a high quality system of care for persons with advanced illness. The resolution contains five elements.
Element 1. Finance and payment mechanisms that support access to person-centered care coordination and care management across all care settings, providers, medical conditions, and time.
Element 2. Advance care planning through counseling, disclosure, and meaningful discussion of prognosis, goals of care, personal values, and treatment preferences, including planning caregiver’s needs.
Element 3. Access to palliative care, community based supportive services, and caregiver support to enable persons with advanced illness to remain in the home and community in accord with their preferences and needs.
Element 4. Expanded research to improve care delivery and payment practices that will benefit individuals and families facing advanced illness.
Element 5. A strong health-care workforce educated and equipped with the clinical and social skills to serve people with advanced illness and their families and caregivers.
As professionals, we all need to understand the context of advanced care planning, and encourage our clients, family, and friends to continually assess their health. When a chronic illness takes the stage, encourage them to express their wants, needs, and desires through the end of life.
As a nation, we need to begin to move from the care model described by Gawande to one consistent with the five elements.
We need to honestly assess the baby boomer wave that began to build in 2014. Ten thousand people in the United States turn sixty-five every day, and it is estimated this will go on for the next seventeen years. This infant wave is already causing financial issues for government and health services, a quality of life issue for the health system, and a dilemma for thousands of household trying to support loved ones. •CSA
John Parr is a partner in the law firm of Parr Bylerly in Olympia, Washington. His focus is on estate planning, elder law, probate, and the “what if” questions of aging. He is a Fellow of the American Bar Foundation, and a member of The Washington Bar Foundation and American Bar Association. He can be contacted at JMP@50pluslaw.com. Visit his
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