Aunt “Rose” is 94, very frail, bedridden and unable to communicate but is still a beloved member of an extended family. She is in the hospital again with dehydration and sepsis. She has become a “frequent flyer”, as they say in the healthcare system: moving from the nursing home to the hospital and back again every few weeks. Although her family and nursing staff are very caring and attentive they can’t seem to break the cycle. During this last hospitalization the doctor broached the subject of artificial feeding. Her family is unsure of what to do, they don’t want to prolong her life if the quality will be compromised but they can’t imagine life without her.
When caught up in these kinds of quandary caregivers need to step back and look at the big picture. Ask: “What will be accomplish by extraordinary care? Will the person’s quality of life be maintained or improved? Whose needs are being satisfying, yours or your loved one’s?” There is a quote by the Dalai Lama that says, “Remember that the best relationship is one in which your love for each other exceeds your need for each other.” It’s hard to let go of a loved one, but sometimes it’s the most loving thing we can do.
No one wants to face death and dying – it is easier to ignore that part of life. But it is a part of life and caregivers must prepare and plan for it. I recommend reading Hard Choices for Loving People by Frank Dunn. This compact easy to read book addresses CPR, artificial feeding and comfort care for someone with a terminal illness. It can be ordered by mail through A&A Publishers, Inc., P.O. Box 1098, Herndon, VA 20172-1098, or through the website, www.hardchoices.com .But the best course of action is to ask a loved what his or her wishes are for end of life care. I encourage every adult regardless of age and health status to write a Living Will (also called a Medical Advance Directive) and include a Durable Power of Attorney that identifies a healthcare agent of choice. A Living Will not only lets you say what kind of care you don’t want, it allows you to state what care you do want when you are unable to speak for yourself. The Durable Power of Attorney empowers the designated healthcare agent to follow your living will and advocate for you. These documents only become valid when the person can not make his or her own decisions. The person must be competent to sign them, so don’t wait too long to address this issue.
There are many resources available to help with writing a Living Will. Local hospitals and Hospices have standard forms and documents can be downloaded from several websites such as: www.aarp.org, www.choices.org/ad.htm, www.elderweb.com, www.jjs.com/healthforms.html. Aging with Dignity is an organization in Florida that produces a document called Five Wishes. It covers everything from naming a healthcare agent to how you want to be treated by others. It can be obtained by contacting Aging with Dignity, P.O. Box 1661 Tallahassee, Florida 32302-1661 or www.agingwithdignity.org. There is a small fee but it’s well worth it. In order to avoid any unnecessary heartache it’s a good idea to check with the State Bar Association about what documents are legally binding in the state where the person resides.
Since it’s too late for Aunt Rose to make her own decisions, her closest next of kin will be asked to decide. If there are several close family members, a meeting for a consensus should be held and one person designated to make the decisions. Consulting with Hospice is also a good idea. They can help weed through the medical jargon and put things in perspective. Hospice is about life, especially quality of life. Under their guidance people are cared for with compassion, treated with dignity, and families are comforted and counseled through a difficult time.
Mary C. Fridley