Hospice of the Comforter

Last month we discussed how to choose a healthcare surrogate who would make medical decisions for you should the time ever come when you cannot speak or make decisions for yourself. This month, we will examine a second and very important part of our advance directives, often called the Living Will.

This Spring marks the fifth year anniversary of the death of Terry Schiavo, a news story we followed for years involving a young woman in a persistent vegetative state who was kept alive for over a decade by artificial means, while her family, the courts and the government debated whether or not these treatments could be halted. Ms. Schiavo did not have a written advance directive that would have given clear directions to her family and medical team, leading to those years of conflict and controversy. For a while after her death, there was an upsurge in Americans filling out their advance directives, hoping to avoid similar difficulty in their own families. But, human nature being what it is, the trend soon returned to its previous rate. Approximately 25% of Americans have completed an advance directive; of those over age 65, only about 35%.

Who needs advance directives?

Everyone over the age of 18. Only about 10% of us will experience a sudden and immediate death. The rest of us will go through some period of disease and decline at the end of our life, which may well involve questions about life-sustaining treatments. This period may last a few weeks up to several years, but our families and healthcare surrogates will need guidance if they are put in the position of having to make decisions for you because you are unable.

Without such guidance, our loved ones can be left after our death with guilt and worry over whether they did the right thing; did they really do what we would have wanted? A comprehensive advance directive coupled with communication about our values can be a great gift to our loved ones in guiding them towards providing us with the best care possible.

Without a medical background, however, it can be challenging to make decisions about life-sustaining treatments. What are they, and how do you know whether you would want or need them at a time of serious illness? These are treatments that would often be automatically implemented if an illness had a good chance of being cured or halted, but that can actually cause suffering in conditions where recovery is no longer possible such as the following:

• End-Stage Disease: This illness has reached its final stages in spite of full treatment. For example, widespread cancer that cannot be helped with treatment, or badly damaged heart and lungs, where the person needs oxygen around the clock and cannot make any effort without feeling extremely short of breath.
• Unconscious State (Permanent Vegetative State): Person is totally unaware with little chance of ever waking up. Higher brain functions have been permanently interrupted.
• Permanent Confusion: Person is unable to remember, understand or make decisions. He/She does not recognize his/her loved ones or have clear conversations with them.
• Total Dependence: Person is unable to talk clearly or move by him/herself. He/She depends on others for feeding and hygiene. Person’s condition cannot be helped by rehabilitation or any other means.

Life-sustaining treatments that are often withheld in such conditions include the following:

• CPR: To make the heart beat again and the patient to start breathing after it has stopped. This may involve electric shock and/or use of a breathing machine.
• Mechanical Ventilation: Use of machines that breathe for the person and/or take on the job of other major organs.
• Surgery, blood transfusions, antibiotics, dialysis: These treatments must be weighed carefully to be sure they will not increase or prolong suffering in an incurable condition.
• Tube Feeding/Hydration: Use of tubes to deliver food and/or fluids to stomach or into a vein in a patient who cannot swallow or hold down food/fluids.

In filling out our Advance Directives, we must try to give our loved ones guidance as to which of these treatments we would want in each of the above conditions. We don’t have to make the same choices for each, but should choose an Advance Directive form, such as the Five Wishes, which allows us to individualize and explain our choices. Also, people often believe that Advance Directives are only necessary for those who don’t want extraordinary measures taken. But if you want every technological and medical intervention tried on you until the very end of your life, then you had better write that down as well in an Advance Directive!

In the State of Florida, an advance directive must be signed by two witnesses over the age of 18, and one of these must not be related to you. Florida does not require the advance directive to be notarized, and as long as it is witnessed properly it is considered a legal document, which your healthcare team is required to follow at the request of your healthcare surrogate.

Once signed, the document should be copied and given to all of your doctors, your healthcare surrogates, and anyone else among family and friends who might have a say in your care.

If all concerned parties have a copy, it is much more difficult for individual members to argue and cause conflict at a time when you cannot speak for yourself. Keep the original in an accessible spot and make sure several people know where it is located. The resources listed below can help you further with choosing and completing your advance directive.

I hope that you will take the time to give your family and yourself this gift, which is meant to clarify your wishes in order to provide the quality of care that you would most prefer at the end of your life. Once it is done, most of us feel we have completed and important life task, and our loved ones feel great relief that they will have guidance at a difficult time.

Aging With Dignity (Five Wishes®)

The Five Wishes® document helps individuals express care options and preferences. This advance directive meets the legal requirements in most states and is available in 20 languages for a nominal fee.

Hospice of the Comforter can also provide you with a free copy of the Five Wishes® . If you would like a copy, please contact us.

Caring Connections

Caring Connections offers free, state-specific advance directives for all 50 states and DC that meet the legal requirements for each state. Download individual copies for free or call 800.658.8898 to have a copy mailed to you.

Consumer’s Tool Kit for Health Care Advance Planning

Good advance planning for health care decisions is, in reality, a continuing conversation - about values, priorities, the meaning of one’s life, and quality of life. The 10 tools in this “kit” contains a variety of self-help worksheets, suggestions, and resources. The tool kit does not create a formal advance directive for you. Instead, it helps you do the much harder job of discovering, clarifying, and communicating what is important to you in the face of serious illness.

Center for Practical Bioethics

Caring Conversations is a workbook to help individuals and families communicate with each other about their healthcare preferences and contains advance directive documents. These forms are valid in every state when notarized and signed by two witnesses. Download for free or call 800.344.3829 to order.

Project Grace

Project Grace offers a free Advance Care Planning Document that is legally valid in states that do not require forms to be notarized. Download for free, or call 877.99.GRACE to order a copy.

National Resource Center on Psychiatric Advance Directives

National Resource Center on Psychiatric Advance Directives offers general and state-specific information on psychiatric advance directives.