Roberta Baker: Silver Linings: Advance-directive wishes aren’t always lock-tight

Jan. 20--At age 67, Ann Franz moved into a cozy two-room apartment at the Towers, a perpetual care community in Winter Park, Fla., with her husband, a retired Presbyterian minister, who was showing signs of dementia.

His memory and function quickly eroded. He died two years later. Ann secretly hoped she would pass away before she declined in a similar manner.

But despite advocacy from her daughters in Wolfeboro and in San Francisco -- an attorney licensed in California -- and legal documentation spelling out her desires, her end-of-life documents weren't sufficient to allow her to succumb decades later when she was clearly failing.

Franz finally passed away in 2013 at age 94 -- after what her daughters consider too many years of suffering.

Her medically prolonged life while battling profound dementia, late-stage chronic obstructive pulmonary disease and recurrent pneumonia -- and her daughters' grief over wishes not honored -- is a cautionary tale about the gray areas, legal requirements and limitations of defining quality and duration of life.

"She was completely done mentally and physically. 'If I'm gone, pull the plug, for heaven's sakes' -- I know that was her intent," said her daughter Tina Maxfield of Wolfeboro, who had power of attorney for health care. "She didn't know who she was, or where she was. Touching her would give her a skin tear. She should have been allowed to die five years before she did. She was a corpse being kept alive."

In quarterly on-site meetings with nursing home staff and administrators, and updates by phone when Franz's condition was changing, "We went over her wishes so they would understand," said Franza Giffen, her daughter in San Francisco who serves as a fiduciary for elders in California and is familiar with the law. "They took care of her the way they wanted to and felt was right instead of following the letter of her wishes."

Such is the Achilles heel of advance directives -- the documents designed to protect end-of-life desires. Even when one's intent is made clear, and there are representatives to carry that out, on-site interpretation by medical staff who feel ethically bound to preserve life can color the interpretation -- and extend life even when quality has long departed. And sometimes, in the final hours, patients plea for emergency assistance -- which effectively trumps the papers they signed years ago declining heroic life-saving treatment, said Dwight Sowerby, an elder law attorney in Amherst. Before become a lawyer, Sowerby was a nursing home administrator for 25 years.

When time permits, he advises facilities to convene ethics committees to decide case by case what is right, while honoring the intent of advance directives. Those include health care proxies and living wills, and do-not-resuscitate orders (DNRs) put into place when the patient was competent.

The process requires answering uncomfortable questions and informing family members and physicians: Who will advocate for my wishes when I can no longer speak for myself? What final arrangements will I have? Do I want heroic efforts to preserve my life, such as intravenous fluids or tube feeding, dialysis when my kidneys fail, cardiac resuscitation when my heart stops beating, or to be hooked up to a ventilator when I can't no longer breathe?

Health care proxies take effect when patients are found incompetent, unable to understand the issues, including their medical condition and prognosis.

Toward the end of life, what is medically necessary versus ultimately fruitless, life-sustaining versus merciful can become a subjective and emotional conundrum, pitting facility liability and medical ethics against family members who now have authority to make decisions for elder loved ones.

Sowerby and Donald Sienkiewicz, an elder law attorney and former EMT, advise families to seek a probate court ruling when the nursing home seems to be defying advance directives by extending a life of suffering.

"In the old days, the medical profession interpreted its duty to keep people alive by any means and expense necessary," said Sienkiewicz of Estate Preservation and Planning in Amherst.

A cultural shift during the last 20 years has tipped most doctors toward allowing patients to die with dignity and without heroic measures if that's what they desire, he said. He stresses the importance of having detailed, proactive documents in place that address a range of situations as well as legal and family concerns.

"Nowadays, people really need strong advocates," said Carol Tubman, RN, hospice and palliative care liaison for Cornerstone VNA in Dover.

"There's something to the nature of advocacy that you have to do for your loved one; you have to be the squeaky wheel" maintaining cooperation and communication with nursing home staff, said Sarah Ambrogi, an elder law attorney in Manchester. She advises clients to update their documents regularly and fill out comparable forms in the state where an elder resides, even though New Hampshire's advance directives apply in other states.

At age 90, more than 20 years after her husband's passing, Franz was being kept alive with antibiotics to treat near-constant pneumonia, against overall desires she had documented in a trust created in California. She also had signed a do-not-resuscitate order in Florida. The only reason she didn't succumb is because of antibiotics justified by nursing home staff as palliative care, Maxfield said. "To me, antibiotics are not palliative care," which is defined as pain relief and comfort-giving treatment.

According to legal and health care experts, measures to fight a disease or chronic illness such as recurrent pneumonia can only be discontinued in hospice, when death is expected within a year. Franz moved in and out of hospice several times in her late 80s and early 90s, rallying from near-death each time.

She finally died at 94, after a Towers social worker informed her daughters that they could request a hospice evaluation. "Why didn't they tell us at least two years earlier?" said Maxfield, who is still incensed by what she sees as her mother's senseless suffering.

Had she and her sister known, Maxfield said they would have asked Franz to create a video recording her wishes while she could still express herself -- a practice recommended in a TED Talk by a physician who advises giving copies to family members and an attorney so everyone can be made aware.

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Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire's aging population and seeking out solutions. Union Leader reporter Roberta Baker would like to hear from readers about issues related to aging. She can be reached at [email protected] or (603) 206-1514. See more at www.unionleader.com/aging. This series is funded through a grant from the Endowment for Health.

Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire's aging population and seeking out solutions. Union Leader reporter Roberta Baker would like to hear from readers about issues related to aging. She can be reached at [email protected] or (603) 206-1514. See more at www.unionleader.com/aging. This series is funded through a grant from the Endowment for Health.

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