My mother’s passing was particularly sweet because we knew what she wanted. In response  to my father’s cognitive impairment, Mom empowered my sister-in-law to be her legal guardian. Many problems were thus avoided. As my mother declined, she discussed her physical condition with her doctor, what her death would probably be like, and her options. Then Mom made known her preferences regarding her care. She simply asked to be kept comfortable. Kaiser’s hospital staff was very kind to all of us as they administered Comfort Measures Only.

My mother also made a specific request of her family. She asked that one of us would hold her hand. We were powerless to stop death, but we could do as she asked. For 10 days, our family took turns around the clock holding her hand and loving her.  Some sang songs to her. Others recalled favorite memories or re-told family stories. Surprisingly, there was much laughter. Because we knew Heaven was her destination, we could also comfort her and ourselves by reading her favorite scripture aloud—I Corinthians 13. At some point, each and every one of us held her hand. It was such a simple request, but Mom’s spoken need for contact, affection and comfort gave us a reason to work together for an extended period of time. She (1) had empowered her guardian with a legal document and (2) the medical team with her clearly stated preferences, Mom (3) also empowered her family with a focus: Please hold my hand.

LET THEM KNOW WHO’S IN CHARGE OF YOUR CARE

Give your Medical Representative, your doctors, and your hospital copies of your Medical Power of Attorney that has been notarized. Equipping your Medical Rep or Guardian with legal documents opens doors and removes unnecessary hesitation and delays.  Doctors and nurses are trying to protect you by adhering to HIPPA laws.

[1] Make it easy for them to know with whom they should be discussing your care. Many families contain busy bodies, dramatic or demanding personalities. Others can be understandably incapacitated by a crisis or grief. Protect yourself and your carefully selected Medical Representative by placing a notarized Medical Power of Attorney in his/her hands. This important choice is discussed further in the Heritage of Hope Video Series, the Household session, by an attorney and a physician.

If you use your state’s Advance Directive form to appoint your Medical Representative, we suggest you only fill out the portions of the form concerned with your representation. It will then be necessary for medical personnel to consult your representative and not just a form. Also, your preferences may change depending on future circumstances you cannot know now. If you specify detailed choices now, you undermine the power of your Medical Representative. You might also set up a conflict between your Medical Rep and the doctors and nurses caring for you.

Consider the stroke victim who needed to re-learn swallowing. This gentleman was almost denied treatment because he had checked the box on his Advance Directive saying “no tube feeding.” After his family went to battle for him, he was temporarily intubated, re-learned swallowing, and lived an additional two, meaningful years. Such conflict can be avoided by discussing your anticipated choices with your Medical Representative in detail but allowing them to respond flexibly as your health care situation changes by not specifying end of life procedures on your Advance Directive. According to Joni Eareckson Tada, the question is Do you want to be represented by a piece of paper or a person?[2]

Annual Family Meetings give you an opportunity to make known the decision-making role you have given your Medical Representative. Some people believe that the way to express their love and loyalty is to pursue extreme curative care in the ICU until death. You, however, may wish to die in your home with Hospice assisting your family. Leading your family through difficult discussions now may avert conflict and misunderstanding later. How much detail you wish to discuss regarding your choices for end of life care will depend on the readiness of your people to discuss death. Thankfully, such discussion does become easier over time.

Initially, the most important thing is to validate the authority of your Medical Representative to carry out your choices. Clearly express your wish that your family support him or her. It is worth focused effort now to achieve understanding and shared expectations, so your preferences will be followed and your Medical Rep will have the support they need. If there are difficult decisions to make at the end of your life, it is your Medical Rep who will make them.

Philippians 2:2 Fulfill my joy by being like-minded, having the same love, being of one accord, of one mind.

[1] The HIPAA Privacy Rule regulates the use and disclosure of Protected Health Information (PHI) held by “covered entities” (generally, health care clearinghouses, employer sponsored health plans, health insurers, and medical service providers that engage in certain transactions.)

[2] Joni Eareckson Tada, When Is It Right To Die?, page 161.