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Patient Quality of Life: Should Doctors Guess It?

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  Patient Quality of Life:
Should Doctors Guess It and Use It?
By Jean Miller
In response to a physican's question on the Bio Ethics Website
Date: Sun, Mar 3, 2002 5:05 AM
From: Jean E. Miller

You asked:  Should quality of life of a patient be a factor in medical decision-making and if so should physicians and health care workers ever make such an evaluation?

My Response: Having been the primary caregiver for my daughter Kelly, who had Juvenile Huntington's Disease for 15 years, there were instances where the health care profession felt their evaluation of her quality of life outweighed any personal choices she may have designated.

Before she was fired as her primary physician, one doctor tried to force her opinions and surgical recommendations (feeding tube) on my daughter and continually harassed me with horrific descriptions of Kelly's death that she said I would be responsible for by denying Kelly her recommended treatment.

It was several years later before Kelly actually needed a feeding tube (age 27). When the (new) doctors explained, with compassion and sensitivity, that she was at a cross-road of choosing life or a gentle death, after careful consideration Kelly chose LIFE.

At that young age, Kelly fought to live with every fiber of her being. In the last year of her life she was constantly bedridden, unable to communicate and required 100% total care.

Although HD had disabled her physical body, her cognitive/mental abilities were intact.  Her ability to still ENJOY life, through the loving care she received, was obvious to everyone who saw her. Kelly's eyes would still twinkle in mischievous delight, her laughter still rang out, and with patience and love her needs were determined. She was alert and attentive to things around her, still enjoying company of the friends that remained, her favorite TV programs, etc.. It was only during the last few months of her life that that sparkle and quest for life ebbed from her eyes and whether she and/or God chose the timing, she died very peacefully when she was ready.

My suggestion to other Huntington's Disease families is to urge them to do as much advanced planning as possible in letting the person with HD select the choices they want in their care as the disease progresses through the end stages. To support them in these decisions I put most of the resources I had on this subject onto a webpage called "Our Final Journey"  

Kelly and I took care of all those decisions several years before she was unable to communicate and having them completed provided some relief from the mental anguish and heartache families go through during any crisis.  

The other recommendations I make to families are:

1. Make sure their primary care physician honors a persons right to die, i.e. will honor decisions not to have life supporting equipment (such as feeding tubes). If your physician will not, or waivers in their answer, get one that will.

2.  Use resources such as Activities of daily living (ADLs) to help determine the level of care your loved one needs to discuss options in their quality of CARE  with their primary physician but NOT to asses their Quality of Life.

3. If and when the time comes where previously decided medical decisions must be made right now;  for the person who is still cognitive and capable of making a decision, allow them to reconsider that option for their immediate need. A lot of people will opt for a feeding tube or other procedures when it becomes a critical need that they were adamantly against in a time when they were healthier/their orginal decision was made

4. Use resources such as Hospices when the patient is eligible and do not wait until the last few days of life. Kelly was with the Suncoast of Florida Hospice for three years before she died. Hospice was originally recom-mended by her then-physician five years before she died.

Too many families feel that allowing Hospice to enter into a loved ones caring triad that death is imminent or that the patient will give up their will to live knowing they "must be going to die" if Hospice is involved. Explaining to a loved one that Hospice is just another resource to help them [and their caregivers] may help to alleviate some of that concern.

To Health Care Professionals:

I urge anyone in the health care industry to listen to the family; know the patient and their wishes and do everything in your power to help them achieve the choices they have made.

Please, do not impose your choices on them. Most are quite capable of making their own decisions when reasonable options are explained to them.

Thank you for this opportunity to express my thoughts on this topic.

Warmest regards
Jean E. Miller
Clearwater, FL
Email Webmaster~Jean E. Miller