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Determining the Best Care at End of Life

We have so many options when we bring children in the world. We can determine the environment (home or hospital), the help (midwife or physician), the drugs (some or none)—almost everything about the child-birth experience can be our call.

   But, the other end of the spectrum, our death, seems to be at the mercy of the health care system. We talk with our care recipients, have living wills signed, complete other advance directives as our state requests. And, then, when death seems imminent, a squad of health care professionals enters the scene, demanding answers: Your mother isn’t eating. Don’t you want us to insert a feeding tube?

   Battling for your care recipient’s health care wishes may be your toughest fight, especially because you’ll fighting against professionals who may intimidate with their advance degrees and training. And, you’ll be battling at a time when you may be the most emotionally exhausted of your caregiving experience.

   Some tips for this battle:

If you haven’t already done so, be sure to discuss your care recipient’s wishes. If your care recipient is unable to communicate his or her wishes, then schedule a meeting with those who know and love your care recipient best, such as long-time friends, his pastor or rabbi, other family members. What do they believe your care recipient would want?

Complete all the necessary paperwork required by the state in which your care recipient resides. If you reside in one state, your care recipient in another and a chance exists that your care recipient may move to your state, then complete the necessary paperwork for both states.

Share the documents with lawyers, physicians, family members, health care workers, anyone and everyone who will come in contact with your care recipient’s care regime.

Learn about the dying process. What’s normal? What’s treatable? How can you best help your care recipient during his last months, weeks and days?

Find a support system that will hold your hand during this final battle. When your care recipient receives a terminal diagnosis, ask your physician for a referral to a local Hospice organization. Hospice staff not only help your care recipient, but they help the family caregiver with support services.

   If you start to doubt your decision-making ability and your care recipient is in the hospital or nursing home, then ask to meet with the facility’s ethics committee. The committee can help you (and other family members) make the best possible decision for your care recipient.

   And, if you waver in making a decision that your care recipient wants, remember that you guard your care recipient’s quality of life. And, as guardian, quality of life sometimes means a peaceful and comfortable end to life.

Resources that can help:

Hospice Foundation of America: www.hospicefoundation.org/

The National Hospice and Palliative Care Organization: www.nhpco.org

Advance Directive information from the American Medical Association: www.ama-assn.org/public/booklets/livgwill.htm

Partnership for Caring operates the only national crisis and information hotline dealing with end-of-life issues and provides state-specific living wills and medical powers of attorney: www.partnershipforcaring.org. Hotline: 800-989-9455

Activities Index of Articles
Determining the Best Care at End of Life

How Do You Say What They Don’t Want To Hear?

Decisions, Decisions, Decisions

I'm Sooo Mad, I Could....

Battling Your Loneliness

Will The Guilt Let You Live A Good Life?

Sharing the Care with Siblings

Tips to Temper Your Flame

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