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A Continuing Series |
Health Care Planning
by
Charles Antoni, LCSW, RN
This comes from the personal column. It involves my parents Pauline and John. My father was an excellent planner and believed in covering all his bases. He and my mother made out Living Wills/Advanced Directives as a part of their retirement planning. We (my sisters and I) were unaware at the time the directives were made how important they would eventually be in the care of our parents.
My mom was diagnosed with Alzheimer's 1987 she would die 13 years later. Her advanced directive would play an important roll for my siblings and I in the last three years of her life. My dad had a "bad" mitral valve and prostate cancer. When he could no longer care for her in their home (with assistance from my two sisters and hired care) he made the decision to liquidate their assets and enter a life care facility. We had had many conversations about what they wanted should they become debilitated without hope of recovery. He was clear that neither of them wanted "heroic" measures that would "artificially" prolong their life. He was very aware that life has a final stage. He once shared with me that "I get up in the morning and go to the obituaries to see who’s still around".
His death came suddenly. He had been to see my mom to feed her the evening meal. He returned to his own dining area, had a little salad, pitched forward and went to the floor. He was probably dead at that moment. However, the paramedics were called and when all was said and done he was "in the ICU, with tubes, and a ventilator, unresponsive" was the report I got from my sister. What do you want us to do? Although I knew he wanted off the machines I asked to hold off until my wife and I could fly to St. Louis the next day. I selfishly wanted to see him to say good by. The next day I saw him and knew they had his body in ICU but his spirit had moved on. We met as a family and one sister was struggling with the idea of "unplugging him". She sought spiritual counseling and at days end we were in agreement to uphold my father’s wishes that had been made known in his Living Will.
I asked and was granted permission to be the one to remove the tubes and gadgets. We left one IV line in for medications should he become uncomfortable. I was accompanied into the cubicle by dad’s physician. My parents had been some of his first patients when he opened his practice. He said "you have made this much easier for me and I really appreciate that. I knew your mom and dad and I know this is what they wanted". This was the only nursing care I had ever done for my dad. I was and remain so grateful for the opportunity. I can think of no better care that I could have rendered than to grant him his wish to die in peace.
My mom’s case had a different scenario and illustrates the utility of an Advanced Directive. Mom spent a total of 8 years in a nursing home. She was wheel chair bound from day one. She would eventually become bed bound, waste to a mere 90 pounds, and be drawn to a fetal position by contractures.
The need to examine her Living Will would begin three years prior to her death. It was her first case of pneumonia. My sisters and I had a conference call to decide whether or not to treat this illness. We discussed the quality of her life. She was still being gotten out of bed for meals and was able to attend some activities. She still patted her foot in time with music
groups that came to entertain. She would smile occasionally at the taste of a favorite food. The decision was to treat with antibiotics she got better.
A year later same scenario (pneumonia). However, her quality of life had deteriorated. She no longer was gotten out of bed for meals. She mainly ate only finger foods and then only on occasion. She had sustained a pathologic fracture of her leg due to bone density loss and there was no more foot patting. She seemed to respond less to my sisters visits and voices. The decision was lets not treat and let nature take its course. We were dealing with the "energizer bunny". She survived.
In ten months the pneumonia was back. She was barely Pauline to anyone who knew her. She lie drawn up, occasionally moaning, and other than her bed bath had little life activity. She had been on hospice care several times and I had received many calls that "mom has taken a down turn and it looks like this could be it". The phone call I had with my sisters gave the strongest indication that mom was imminently dying. She had her old nemesis pneumonia again and the "bunny" had run out of energy. We decided to call hospice, don’t treat the pneumonia, and keep her comfortable. She died peacefully.
Advanced Directives/Living Wills: Isn’t it time we talk about it? An Advance Directive/Living Will allows you to state your choices about the care you have and that which you choose to decline. Florida Law (Chapter 765, Florida Statutes (http://www.flsenate.gov/Statutes/index.cfm) prohibits any health care facility from requiring you to complete an advanced directive. State rules do, however, require hospitals, nursing homes, home health agencies, and Health Maintenance Organizations to offer any patient or resident the opportunity to complete advanced directives, or if the patient has one, to incorporate it into the person’s medical chart. Advanced Directives completed in another state, in compliance with the other states laws can be honored in Florida.
Advanced Directives simply put is your opportunity to give direction to your care providers (family, partner, support network, professional) on how you are to be cared for; what to do, and what not to allow. It states the circumstances and conditions under which your will is to be honored; should you become incapacitated and unable to speak for yourself. A living will simply allows you while living to make your will known to all those to whom the responsibility will fall.
The simpler forms address resuscitation (CPR), hydration, feeding (gastrostomy tubes) mechanical breathing (respirators), dialysis, and pain control. A more detailed statement covering additional specific’s of care can be found in the Five Wishes Advanced Directive (Http://www.agingwithdignity.org) which is available in English and Spanish.
If you have read my first offering in this series you will remember that the focus of this writing is to raise the issues and stimulate conversation among individuals, couples, families, partners, care professionals, support systems, and communities. These instruments are great catalysts and forums for addressing the issues, making decisions, and documenting choices.
If you are 18 years of age or older I strongly encourage you to have a living will/advanced directive and that you designate a health care surrogate. These are not documents for the aged. It behooves us to realize that the idea/concept of these documents came about through the experience of Karen Ann Quinlan and her family, Nancy Cruzan and her family and others who found their loved one’s in a persistent vegetative state with no recourse to stop the mechanics that kept their loved one suspended between life and death. (I recommend reading William Colby’s "The Long Good Bye"). These cases were those of people in their 20’s, neither had made their wishes known. These cases occurred in the 1970’s and 80’s. In 2003 Terri Chiavo lingers comatose in Tampa while her husband and parents litigate for the right to decide her fate.
There is a complimentary piece to these instruments; the designation of a Health Care Surrogate. This person is different than either a guardian or a durable power of attorney. A guardian is court appointed following a competency hearing. A durable power of attorney is someone you choose to handle your financial affairs when you are no longer able or competent to do so yourself. In some cases and in some states people execute a Power of Attorney for Health Care Decisions. This may even be included when the papers for a durable power of attorney are made up. These two parties do not necessarily need to be the same person. It is important to keep in mind that because a Health Care Surrogate has the same powers (in Florida) as durable power for health care, some institutions only provide for the appointment of a health care surrogate. The designation of a health care surrogate does not require an attorney to draw it up and does not need notarizing. The forms can be downloaded from any number of sites. It requires only to be witnessed by two non-blood relatives. *if you are from outside of Florida you may want to check your individual state law and statutes.
In drawing up this document the single most important decision is your choice of a surrogate. It is important to realize that the statute that created the living will/advanced directive is designed to protect health care providers from litigation for complying with your will/directives. It is not necessarily designed to protect you from the imposition of theirs. That responsibility is the domain of your surrogate. This translates to the need for your choice to be someone who can stand their ground in the face of adversity and emotion.
The person maybe a spouse, partner, or relative. However, it maybe a trusted friend that possesses the ability to put their own emotional needs or personal agenda aside in order to honor your will/directives. They likewise need to be able to stand their ground against the authoritarian stance of health care professionals and their institutions and the possibility of emotional pleas from family. They must no your values and choices.
The purpose/rationale for discussing, deciding, and documenting your choices is simple. These documents help assure your right to self determination. Additionally, they provide direction for your family and health care providers. Therefore, the need to incorporate these entities into the creation of your documents as well as its location once completed in imperative. These documents provide direction and relief to all concerned. It keeps them from having to shoulder the responsibility and accompanying emotions of having to decide to stop or not start life prolonging interventions. They allow you to choose your advocate for what can at times be an adversarial encounter. It removes the emotional charge of worry and self doubt as to what you might want or not want were you able to speak for yourself.
I encourage you to think, discuss, and enact your choices, directives, and will. We will all be grateful; you most of all.
Copyright 2003 Charles Antoni, all rights reserved
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