*Here in America, our culture, tells us that we should fight hard against age, illness and death. And holding on to life, to our loved ones, is indeed a basic human instinct. However, as the end of life approaches, letting go” may not feel like the right thing to do.
Americans are a people who plan. We plan everything: our schedules, our careers and work projects, our weddings and vacations, our retirements. Many of us plan for the disposition of our estates after we die. The one area that most of us avoid planning is the end of our life. Yet, if we don’t plan, if we don’t at least think about it and share our ideas with those we love, others take over at the very time when we are most vulnerable, most in need of understanding and comfort, and most longing for dignity.
Most people do not die traumatically. Instead, the last days of their lives are spent in a hospital, nursing home, or in their own home. In your advance directive (see below), you can state your preferences about where you wish to be in the event of terminal illness or during the process of dying. If you choose to be at home, many home care options are available, including home health and custodial care.
Advance directives are written instructions that communicate your wishes about the care and treatment you want to receive if you reach the point where you can no longer speak for yourself. Medicare and Medicaid require that health care facilities that receive payments from them provide patients with written information concerning the right to accept or refuse treatment and to prepare advance directives. Every state now recognizes advance directives, but the laws governing directives vary from state to state.
Probably the most commonly used form of advance directive is the durable power of attorney for health care (or Health Care Proxy). This is a document in which you appoint someone else to make medical treatment decisions for you if you cannot make them for yourself. This is certainly a wise move to make, because if you do not name a proxy or agent, the likelihood of needing a court-appointed guardian (like the hospital itself) grows greater, especially if there is disagreement regarding your treatment among your family and doctors.
It is wise to have an advance directive so that medical personnel and your loved ones will know what care and services you prefer and what treatment you would refuse, in the event that you are unable communicate your wishes. You also can designate the person or more than one person who you would like to make decisions on your behalf. In a surprising number of families, there is disagreement over what a very ill relative would prefer. The advance directive makes your wishes clear. An advance directive can express both what you want and don’t want. Even if you do not want treatment to cure you, you should always be kept reasonably pain free and comfortable.
It’s best to think of Advance Health Care Directives as a work in progress. Circumstances can change, as can your values and opinions about how you would best like your future health care needs to be met. Directives can be revoked or replaced at any time as long as you are capable of making your own decisions. It is recommended that you review your documents every few years or after important life changes and revise your directives to ensure that they continue to accurately reflect your situation and wishes.
Re-examine your health care wishes every few years or whenever any of the “Five D’s” occur:
- Decade – when you start each new decade of your life.
- Death – whenever you experience the death of a loved one.
- Divorce – when you experience a divorce or other major family change.
- Diagnosis – when you are diagnosed with a serious health condition.
- Decline – when you experience a significant decline or deterioration of an existing health condition, especially when it diminishes your ability to live independently.
Another form or method of instruction available to you is a Do Not Resuscitate or DNR order, which instructs medical personnel, including emergency medical personnel, not to use resuscitative measures. A do-not-resuscitate (DNR) order tells medical professionals not to perform CPR. This means that doctors, nurses and emergency medical personnel will not attempt emergency CPR if the patient’s breathing or heartbeat stops.
DNR orders may be written for patients in a hospital or nursing home, or for patients at home. Hospital DNR orders tell the medical staff not to revive the patient if cardiac arrest occurs. If the patient is in a nursing home or at home, a DNR order tells the staff and emergency medical personnel not to perform emergency resuscitation and not to transfer the patient to a hospital for CPR.
Ask your doctor for a time when you can go over your ideas and questions about end-of-life treatment and medical decisions. Tell him or her you want guidance in preparing advance directives. If you are already ill, ask your doctor what you might expect to happen when you begin to feel worse. Let him or her know how much information you wish to receive about your illness, prognosis, care options, and hospice programs.
Medical advances make it possible to keep a person alive who, in former times, would have died more quickly from the serious nature of their illness, injury or infection. This has set the stage for ethical and legal controversy about the patient’s rights, the family’s rights and the medical profession’s proper role.
Each American has the constitutional right, established by a Supreme Court decision, to request that medical treatment be withdrawn or withheld. The right remains valid even if you become incapacitated. Doctors can always refuse to comply with your wishes if they have an objection based on their own religious beliefs, for example, or consider your wishes medically inappropriate. However, they may have an obligation to transfer you to another healthcare provider who will comply with your wishes.
Questions you should ask your doctor if you are diagnosed with a terminal illness:
•Tell me straight: How long do I realistically have?
•Realistically, what can I expect in terms of symptoms and process?
•What if I go Route A or Route B?
•What do you think I should do and why?
All of these questions may sound very difficult to discuss now, when the time for decisions is still in the future. However, they are harder to discuss when someone is really sick, emotions are high, and decisions must be made quickly.
It is true that more older, rather than younger, people use advance directives, but every adult should have one. Younger adults actually have more at stake, because, if stricken by serious disease or accident, medical technology may keep them alive but insentient for decades. Some of the most well-known “right to die” cases arose from the experiences of young people (e.g., Karen Ann Quinlan, Terri Schiavo) incapacitated by tragic illnesses or car accidents and maintained on life support.
Looking at all the information available and making the best decision you can, will give you peace of mind, the comforting awareness that you did what was right as you knew it.
Remember, I’m not a doctor. I just sound like one.
Take good care of yourself and live the best life possible!
The information included in this column is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan.
Glenn Ellis, is a Health Advocacy Communications Specialist. He is the author of Which Doctor?, and is a health columnist and radio commentator who lectures, and is an active media contributor nationally and internationally on health related topics.
His second book, “Information is the Best Medicine”, is due out in Fall, 2011.
For more good health information, visit: www.glennellis.com