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Planning for Future Health Care Decisions: What You Should Know
by Betsy Murphy, FNP, CRNH
If you're like most people, you have already devoted some time to planning for the future, taking steps such as establishing a will or estate plan to ensure that your loved ones will be beneficiaries of all that you have worked so hard to earn. However, few of us take the time to consider the importance of establishing a plan for our future health care should we become seriously ill and unable to speak for ourselves. The reality is that 90 percent of us will have an extended period of illness before we die. This is especially true for the patient with Alzheimer's/Dementia, the course of which can run for 2 to 20 years. In an era of advanced medical technology, it is more important than ever to have an advance care plan. Such plans protect your right to make your own health care choices and prevent unnecessary suffering for families who may struggle with guilt and a sense of failure for many years. With advance care planning, individuals begin forming a vision of their health care preferences at the end of life. They are able to define their beliefs and values. They also begin discussing their wishes with their family and health care providers. They write down their preferences on an advance directive document. This article will provide you with some basic information on advance care planning and how to get more information and assistance. Here are some surprising facts about end-of-life care in America today:
And most important:
Advance care planning is a proactive process that enables people to make decisions about their future health care in consultation with family, friends, health care providers and clergy. Ultimately, advance care planning involves making and communicating decisions about how your medical care at the end of life should be managed. Effective health care planning involves the following five steps:
In exploring care options at the end of life, it is important to understand the difference between curative medical care and palliative care. Curative medical care seeks the cure or remission of disease. In the case of dementia, the American Medical Association has recently published a guide for physicians viewing Dementia as an eventually fatal condition for which no curative therapy is available. In the guide, Alzheimer's/dementia is viewed as a life altering terminal illness from which people die over a span of years rather than months. Choices such as tube feeding, hydration and antibiotics are available to these patients. In most cases, despite these efforts, patients will experience a physical decline affecting their quality of life. As the patient becomes more fragile, medicines and procedures that previously were life enhancing actually can become burdensome and harmful. There can be complications of treatment and an increase in suffering. Some patients will spend their final weeks of life receiving treatments that, in retrospect, did not enhance their quality of life or allow family to spend quality time with them. In contrast to curative care, palliative care seeks comfort and peace. It focuses on patient comfort and maximizing quality of life. It attends to physical, emotional and spiritual needs of patients. Palliative care creates an environment in which patients can have meaningful encounters with family and loved ones. Sometimes people misunderstand palliative care as "withholding care" or "doing nothing." In reality, palliative care is "aggressive" comfort care. Hospice care, for example, combines state-of-the-art pain management with emotional and spiritual support and complementary therapies to meet the patient's human needs. Curative care and palliative care need not be mutually exclusive, and medical circumstances will create many difficult choices for patients and families. So it's important to explore possible health care scenarios and health care choices in advance. It is in the interest of all patients with progressive cognitive disorders to outline their health care preferences in advance of their physical and mental decline. An advance directive is any statement made by a competent individual about preferences for future treatment knowing that the person will be unable to make decisions at the time of treatment. A living will is usually a pre-printed document and is one kind of advance directive, but is limited in what it covers. The majority of people tend to complete a living will and a durable power of attorney once they understand the limitations of a living will. A durable power of attorney allows you to appoint a primary agent to make health care decisions for you should you become incapable of making an informed decision. Through a durable power of attorney, you identify someone you trust to see that your advance medical directives are followed. It is important to involve this person in all advance care planning discussions. If you know that in the event of a terminal illness you want life-sustaining procedures withheld or withdrawn, you may also want to sign a living will. Hospital associations, medical societies or bar associations in your state or county can provide advance directive forms for your state. State forms can also be downloaded on-line at the Partnership for Caring website partnershipforcaring.org. Remember that pre-printed forms may not meet all your needs. Take the time to consider all possibilities and seek advice so that the document you develop meets your special needs. To speak with someone about end-of-life care and advance directives, please call the Alzheimer's Association HelpLine -- which has advanced directive forms and information to assist with end of life decisions -- 703-359-4440 or toll-free 1-800-272-3900.
In the National Capital Area chapter service territory, for more information about Considering Advanced Directives, please contact the Chapter's telephone Helpline at 703-359-4440 or toll-free 1-800-272-3900. Outside the National Capital Area, please contact your local Chapter.Subscribe to our E-Newsletter! © 1997 - 2005 Alzheimer's Association, National Capital Area. All rights reserved. |
