by Cheryl Ellis, Staff Writer

Trying to predict the future when diagnosed with a debilitating illness leaves caregiver and loved one with many, sometimes confusing, alternatives. Advance directives, such as a living will, can provide families with some comfort. There are online living wills that can be printed, estate lawyers who help with end of life planning through and designating a medical power of attorney.

In either case, advance directives are meant to give the loved one the ability to say what they prefer should they be in a position where they are unable to speak for themselves. Each state regulates their usage differently, and it is important to know how your state utilizes them.

More Definitions

A medical power of attorney allows the loved one to designate a surrogate, or someone to speak on their behalf. It is vital that caregivers and loved ones discuss the variations fully. Simply leaving it as “I know you’ll do what’s best for me” can ultimately take the caregiver down a path where “what’s best” and what the loved one would want oppose one another.

Annie’s mother had been a registered nurse for years. Over time, her mother would often comment that she wouldn’t want her daughter to be the surrogate.“You’ll just tell them to pull the plug.” This was her mother’s communication style, direct and uncensored. “I want them to do everything they can to help me.” As her mother was always lucid about her medical care, paperwork fell to the wayside. However, it seemed clear to the family what was expected: spare no course of action, and keep her attended.

Unfortunately, when her mother had to enter a nursing home, her brother backed away from making any medical decisions. Because she was in the medical field also, she knew the protocol and language. What she didn’t expect were the options and how their traditional definitions would change.

In a nursing home, there would be specific orders for pain and other medication at intervals. There would be interventions that might solve one health crisis but create others.“They would have put her at the end of the nursing floor and allowed her to scream until they could give her the next dose of medication.”Faced with a nursing home and it’s traditional definition of “round the clock care,” Annie had to consider another option.

A Possible Alternative

Hospice may be one alternative when advance directives fail. Compassionate end of life service allows the caregiver to know necessities are being met without extensive measures.

Caregivers may be taken aback by hospice employees who clearly state that hospice does not “correct” or “cure” the illness. Once past this blunt statement, caregivers can find relief that there will be continuous care, and the loved one will not suffer needless pain.

This was the option Annie chose for her mother. She didn’t realize it at the time, but it was hospice care, not a nursing facility, that would meet her mother’s wishes. Everything would be done to keep her attended and free of pain. Minor problems would be addressed by the hospice physician. There would be no extensive measures with possible complications that would require other extensive measures.

While Annie’s mother preferred her life to be prolonged by any available means, no one had considered that more procedures might create problems that would deteriorate her permanently.

Calculating The Odds

Discussing advance directives can be an uncomfortable topic, and predicting the various turns health might take can be unclear. Updating advance directives yearly can offset the discomfort of approaching a tough subject. It also helps with determining which options might be best for the foreseeable future.

Caregivers must also consider advance directives for their own needs. While one’s health may be in top shape at one time, other factors may come into play where the caregiver needs a healthcare advocate. The loved one being cared for may be completely unable to handle such decisions. Managing one’s own possible needs is another aspect of caring for the loved one.

Where Trust Lies

Technology has grown exponentially since the 1960s, and while we still place our faith in doctors and medicine, it is our family members who end up making the final decisions. Unless a medical case has been taken over by the court system, doctors will provide information and guide family to a competent decision. Still, we may not “like” the doctor assigned to a loved one’s case, or there may be other factors that interfere with being able to stop extensive treatment regimens.

Keeping family abreast of changes in decisions, understanding different treatment options, and other needs can be done via Lotsa Helping Hands, a free online service.

Everyone can follow up as they choose. It is also a way for the primary caregiver to stay in touch with any secondary advocates.

Whether caregivers choose to use an online service or simply notify key individuals, it is important to keep a copy of the advance directives on hand and easy to find. Giving a copy to one or two individuals who can be prepared to show the directives if caregivers cannot find their copy is a backup worth considering.

Many Kinds Of Directives

For the loved one with mental illness, there are psychiatric advance directives. Between family and physicians, goals for care can be decided upon for the future. The National Research Center on Psychiatric Advance Directives provides state-by-state information and other useful data for caregivers and loved ones. There is even a link to testimonials about advance directives.

Knowing treatment options for physical and mental health will help caregivers and loved ones maintain a sense of control over their situations.