Plan your life…all the way to the end

Tina Soares recalls how her 84-year-old father, who had end-stage Parkinson’s disease and another underlying condition, tried to help his home health aide by vacuuming. Without the aid of his walker, he fell and was taken to the hospital with a head wound.

Because Soares, a registered nurse, had already had previous discussions with him regarding what medical measures he did or did not want done to possibly extend or save his life, her father was stitched up and sent home. He died 72 hours later, she said.

“Our goal was to get (him) home and be comfortable,” she said.

Without having had these conversations, Soares said, her father likely would have extensive testing and been admitted to the hospital for more treatment than he would have wanted. Although he was able to speak for himself, in an acute or emergent situation, it can be confusing and stressful for patients and their families.

Soares, the program manager for the Quality of Life Management Task Force, leads a community effort which encourages Cape Codders to designate a healthcare agent, someone who is legally empowered to act on another’s behalf to make medical decisions when that person is unconscious, has dementia or is otherwise unable to make their own choices.

The task force has been meeting for more than a year, and its 73 members represent a broad swath of the Cape community, such as Cape Cod Healthcare, estate planners, assisted living facilities, private healthcare agencies, religious leaders and nonprofit social organizations. It draws upon the public education effort of the non-profit, Honoring Choices Massachusetts, and The Conversation Project for information about planning ahead and starting the conversations.

Spreading The Word

Task force members are charged with spreading the planning message to their respective organizations and groups. Soares credits Cape Cod Healthcare Chief Medical Officer Donald Guadagnoli, MD, with starting and championing the initiative.

Naming an agent on the healthcare proxy advance directive can be done by completing and signing a simple one-page form in the presence of two witnesses, who also sign it. A copy of the document should be given to the proxy, who should be told what decisions the individual would like done and under what circumstances, Soares said.

These wishes may be spelled out in another document known as a living will or personal directive, which is not legally binding in Massachusetts but can help guide the proxy when making decisions. A copy of these documents should also be given to and discussed with the individual’s physician, she added.

Cape Cod Healthcare will be offering a package of information, including a healthcare proxy form and a personal directive document and instructions, on its website during the week of April 16-23, in honor of National Healthcare Decisions Day, Soares said. Related information and forms can also be obtained at the Honoring Choices Massachusetts website via its Who’s Your Agent? program.

Some considerations when preparing a personal directive and choosing a trusted friend or relative to act as a healthcare agent include your:

• Cultural traditions
• Religious beliefs
• Personal desires about quality of life
• You should also consider what life sustaining treatment would be acceptable to you

Just drawing up a healthcare proxy document is not enough, Soares said. You have to have a conversation to make your wishes known to family members.

“Because mom or dad completed a healthcare proxy form and stuck it in a safety deposit somewhere, kids don’t know what you want,” Soares said. They may be faced with making difficult decisions leaving them wondering if they made the right decision or should have done things differently.

Other Documents

In addition to a healthcare proxy and a personal directive, other documents may be considered when planning. These include:

• Durable Power of Attorney, which designates someone to make financial decisions for you when you cannot. Requires preparation by a lawyer.
• Comfort Care/Do Not Resuscitate form or DNR, which tells emergency and health workers to not attempt to restart heartbeat and breathing. Filled out with a doctor.
• Medical Orders for Life-Sustaining Treatment or MOLST, which outlines your treatment choices. Prepared with your doctor, nurse practitioner or physician assistant.

Don’t wait till disaster strikes to do this planning, Soares urged.

“In a time of crisis is not when these conversations should be taking place,” she said. “The time is when someone is stable, can think about what matters to them.”

While initiating these conversations may be difficult, they are important, and may spare relatives the anguish of guessing a loved one’s wishes.

Planning Is For All Ages

According to Soares, the need for end-of-life planning is high on Cape Cod, as the proportion of people over 65 in Barnstable County – 27.8 percent – is twice that of the national average. Couples may retire here while still living independently, then become frail through chronic diseases, such as diabetes, congestive heart failure or liver disease, or need help because one or both develop dementia. Adult children may live far away and be uncertain of Mom or Dad’s healthcare wishes.

Despite the need, less than 25 percent of patients admitted to the hospital have a healthcare proxy, she said.

“Putting the work upfront alleviates a lot of the burden and stress at the end,” Soares said.

Such planning is not just for seniors, but for all adults, she said. Advance healthcare directives should be updated as a person’s age, circumstances and wishes change, Soares said. For example, what a young mother wants might be quite different than an elderly woman with cancer. Life events such as marriage, divorce, death of a spouse or major health changes may trigger the need for an update.

“Individuals need to know they can change it at any time,” she said.

Soares said her father may never have done the planning if she hadn’t discussed it with him.

“His particular generation didn’t want to “burden” his children – left decisions up to the physician,” she said.

But the plans they worked out together meant he lived out his final days at home, rather than in a hospital, undergoing procedures.

“The focus is quality of life,” Soares said, recalling that she had asked him: “Dad, what can we do at home so you can go outside and fill the birdfeeder, water the window boxes? ”