PERF, The Pulmonary Education and Research Foundation, is a small but vigorous non-profit foundation.  We are dedicated to providing help, and general information for those with chronic respiratory disease through education, research, and information.  This publication is one of the ways we do that.  The Second Wind is not intended to be used for, or relied upon, as specific advice in any given case.  Prior to initiating or changing any course of treatment based on the information you find here, it is essential that you consult with your physician.  We hope you find this newsletter of interest and of help

Advanced Directives

Out of all this pain and controversy has been born one very positive outcome: a national awareness of the need for Advanced Health Care Directives. To read an additional wonderfully written article on this by Dr. Petty, we suggest that you look in the January 2004 Second Wind. We now reprint part of this on the Five Wishes Living Will Program, as recommended by Dr. Petty, which will help you with Advanced Directives.

If you're wondering what the Living Will or Advanced Directives this will help. The Five Wishes Living Will helps you to understand this whole process much better. This Five Wishes Program embodies and clarifies or expands on the advance directives that can be used to guide surrogate decision making. Details follow:

There are a few states (about 10) in which Five Wishes does not yet meet the legal requirements. These states either require a specific state form, or that the person completing an advance directive be read a mandatory notice or "warning." Residents of these states can still use Five Wishes to put their wishes in writing and communicate their wishes with their family and physician. Most health care professionals understand they have a duty to listen to the wishes of their patients no matter how they are expressed.

Laws vary from state to state. Many states have Living Wills or Advanced Directive forms available from the state Thoracic Society or from the individual State Government. Some of these are free and others also charge about $5.00. An example is the one that can be gotten for $5 from the California Medical Association at www.cmanet.org/bookstore. 

The only important thing is to make sure that you and everyone in your family over the age of 18 seriously considers filling out one of these advanced directives so that no matter what state their body is in, they remain in ultimate control.

Five Wishes:

Because there are many aspects of life that are out of patients' control, especially when serious illness is present, the Five Wishes booklet was created as an easy-to-complete form that allows the patient to say exactly what he or she wants. The beauty of the document is its simplicity combined with sensitivity and specificity. It was written with the help of The American Bar Association's Commission on the Legal Problems of the Elderly, and the nation's leading experts in end-of-life care. Five Wishes is for anyone 18 or older. Because it works so well, lawyers, doctors, hospital, hospices, religious institutions, employers, and retiree groups are handing out this document. Unfortunately each state has different laws and about 10 have restrictions on the use of only this advanced directive. 

Wish 1:

The person I want to make health care decisions for me when I can't make them for myself. This is selecting a durable medical power of attorney. An explicit discussion of whom the patient should select and the specific things the patient wants his or her agent to do are listed.

Wish 2:

My wish for the kind of medical treatment I want or don't want. This is equivalent to a combination of the classic "living will" and the "advance resuscitation directive." Included in this section is a discussion of "what life-support means to me." It explains what Do Not Resuscitate (DNR) means in simple but explicit lay terms. Specifics of what the patient wants done in the following settings are listed:

1. Close to death 
2. In a coma and not expected to wake up or recover 
3. Permanent and severe brain damage and not expected to recover 

Wish 3:

My wish for how comfortable I want to be. This specifically requests enough pain medicine to provide comfort, a desire for hands-on care such as bathing, massages; for soft comforting music to be played and for spiritual needs to be fulfilled.

Wish 4:

My wish for how I want people to treat me. The selections under this wish have to do with personal visitation, attitudes the patient wants conveyed at the bedside, the desire for prayer and spiritual support and a clarification of where the patient wants to die (e.g., home).

Wish 5:

My wish for what I want my loved ones to know. A wonderful selection of very personal requests is provided. There may be statements about how much someone is loved, a request for forgiveness, a request for family and friends to make peace and bond during the patient's dying process, and a request for burial vs. cremation.

For many patients, when the decision not to continue living has been reached, support from hospice and other homecare agencies may be welcomed. Patients have the choice of spending their final days at home or in a facility operated by hospice. Hospice workers offer quality of life, compassion and dignity. Physical, emotional and spiritual support is provided. Control is returned to the patient.

The use of advanced directives clarifies what patients want regarding their medical care. Their purpose is to make certain each individual's desires and wishes are followed. Advanced directives do not remove hope or the desire for life. They simply give patients control, freedom, comfort and peace.

If you would like more information on this subject, or a copy of Five Wishes, go to the website of http://www.agingwithdignity.org. You may also write to:

Aging with Dignity, PO Box 1661 

Tallahassee, FL 32302-1661 

Phone: (850) 681-2010

Fax: (850) 681-2481. 

Five Wishes is $5 for one copy, or 25/$1 each.

Do you have a question about respiratory disease that has been bothering you? 
If so, feel free to write and ask us, either through our web site or by mail.
We answer all of your letters.

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