OLEAN, NY— “How many times have we said if I’m like that pull the plug?”
Joy Lavelle, admissions coordinator at the Pavilion at Bradford Regional Medical Center, posed that question during a community meeting on advance directives at Olean General Hospital Wednesday.
And Lavelle continued, “But we don’t get more specific.”
Advance directives, she explained, provide a roadmap for doctors and family members to consider when patients/loved ones are unable to express what they want regarding medical decisions.
“We don’t want to talk about advance directives,” Lavelle said. “We don’t like them because that means we are going to die. So, here’s the dilemma: We are actually going to die eventually.”
Lavelle said she acquired expertise on advance directives through life experiences and her career. She has several certifications, including one by the New York State Medical Society, and began working with advance directives at the Cattaraugus County Department of Aging. Prior to that, she worked as a lead Medicare counselor.
She described the process of making advance directives as a “heart issue,” regardless of how much knowledge someone may have, and she recommended that anyone over the age of 18, or with children, have a health care proxy document in place.
A health care proxy document, which Lavelle described as “a simple piece of paper,” is an essential advance directive that is broken up into different parts. The first part is an identifier, who is writing the health care proxy, followed by appointing a primary person to speak for him or her in the event of a medical emergency.
The second part gives the writer of the health care proxy the option of appointing a secondary person to advocate in the event that the primary is unable to do so. Other optional parts include decisions regarding CPR, mechanical respiration and breathing out of a vent, tube feeding, invasive surgery, kidney dialysis, antibiotic treatment and donating organs or tissues.
“The optional parts are very important. If you need a separate piece of paper, I would strongly recommend that you attach one because that is going to be where you list what you want and what you don’t want,” Lavelle said. “In some cases what you don’t want is more important.”
And she noted, “Your document will carry a lot more weight if you have somebody advocating on your behalf that has had these conversations with you. Pick two people that you trust that can follow through with your wishes.”
Lavelle encouraged people to speak with primary care physicians or specialists and ask questions about what certain decisions involve. She added that individuals should also consider making notes on restricting the length of time for options such as mechanical respiration or tube feeding.
The final part requires statements from two witnesses, who are not appointed health care agents and who are over the age of 18.
Lavelle stressed the importance of making conversation about advance directives among a person’s sphere of influence. She suggested discussing: “What are your faith values? What do you value in life?”
And she emphasized that for family and friends, “those questions need to be a part of that conversation.”
Furthermore, Lavelle stressed the importance of making the existence of advance directives known – and of giving them to doctors.
Lavelle talked about a friend, Jane, who had many conversations but never put her end-of-life wishes in writing.
“But, she got a headache at work,” said Lavelle. “She called her daughter to pick her up and take her to Urgent Care. On the way there, she turned to her 18-year-old daughter, who was not a part of those conversations, and said ‘pull the car over and call an ambulance.’ And that is the last time she spoke.”
Jane had an aneurism that exploded in her head. Lavelle described her as having been 52 and “very healthy.”
Doctors asked Jane’s daughter what she would like them to do for her mom. “What do you think she said? Everything. Because she had no idea,” Lavelle said. “If they had that piece of paper at hand that clearly stated Jane’s wishes, we would’ve allowed natural death to occur — because that is what she wanted. She had made it clear to us verbally, but we didn’t have that piece of paper.”
Lavelle added, “Everything that she built her life around is gone because of the cost of having her cared for in a nursing home.”
Health care proxy documents need to be reviewed every year, Lavelle said. “We change every year; our health changes every year, and we age every year,” she explained. “The people who you appointed, their lives change every year.”
When, and if, someone does decide to review their health care proxy document and make changes, the existing one needs to be revoked by simply crossing out once, signing and dating. However, the old proxies should be kept and stapled together to “have a record of a decision-making process,” Lavelle said.
Having a record of the decision-making process can take the burden off family members by clearly showing that there was thought behind each decision and change.
Lavelle referred to a suggestion made by Rochester-area health consultant Dr. Patricia Bomba, that Thanksgiving is a good time to bring up end-of-live decisions to family members and appointed people by saying, “No pie until we talk about how I die.” Bomba is an advocate for MOLST, Medical Orders for Life Sustaining Treatment, a new advance directive document done in New York State.
MOLSTs take the health care proxy document and make them into medical orders, Lavelle explained, adding they are appropriate for persons who are facing terminal illness or are advanced in age and who have appointed person to speak for them. Different states have directives similar to MOLST but with different names, Lavelle said. Pennsylvania, for instance, has POLST, Pennsylvania Orders For Life Sustaining Treatment.
“Your medical doctor is absolutely involved in this,” Lavelle said in reference to MOLST. “It is very detailed, very specific. However, it is only appropriate if you are looking at the end of your story.”
As Lavelle concluded her program, she told the group, “What I want you to understand today is how important it is for you to have the opportunity to write the end of your story. You’ve written your whole life story. You should take charge of the end of that story.”