By Charles McMahon
April 1, 2012
A man in his late 20s is brought to the hospital after a car accident. He is unconscious and doctors believe his prognosis is grim.
Decisions must be made. And with no indication of what end-of-life care the man would want, family members face the inescapable decision of how to care for someone who can’t speak for themselves. The scenario is not uncommon for people like Dr. Sarah MacDuffie, who as medical director of Palliative Care for Portsmouth Regional Hospital, focuses on relieving and preventing the suffering of patients.
MacDuffie and case manager Geraldine Young too often see the scenario in which families face the difficult situation of having to make a decision for their loved one without knowing what he or she truly would want. Similar to the controversy that surrounded the Terri Schiavo case a few years ago, the situation can be complicated and may have potential legal ramifications. So, with National Health Care Decisions Day observed April 16, the team at Portsmouth Regional Hospital hopes to spread the word about the importance of making your wishes known before it’s too late.
This is where having an “advance directive” comes into play. MacDuffie said too often younger people don’t have a health-care plan for when they reach the end of life. “Young people think, ‘I’m healthy, I have no medical issues, why should I be thinking about the care I want at the end of my life?” she said.
Young said she surveyed all hospital patients one day in March on how many had an advance directive. One-third had the document and it was on file with the hospital, while another third had the document, but did not have it stored at the hospital. The remaining third didn’t have one, she said.
In New Hampshire, the process of determining someone’s wishes can be difficult, MacDuffie said. The state doesn’t have any sort of chain of command when it comes to surrogacy, meaning the legal right to speak on someone’s behalf if they are incapacitated doesn’t go directly to a person’s spouse, parents, adult children or siblings, she said. Maine does have a surrogacy law that indicates a set chain of command.
While more often than not a family is able to reach a consensus on the end-of-life care for their loved one, MacDuffie said there are times when someone’s parent may have a different opinion than another family member. Because state law doesn’t allow the physician to follow a set chain of command for guardianship, MacDuffie said the situation often ends up in court.
“New Hampshire has a fairly restrictive, very tightly written, law, that makes things a little more challenging,” she said.
Setting up an advance directive can be a multi-pronged effort. “Whether it’s who you want to make those decision for you or exactly what kind of care you want to receive, an (advance directive) really takes the burden off the family,” MacDuffie said. “It gives an individual an opportunity to be very clear about what they want if they’re not able to communicate it at the time.”
An advance directive has two main parts, a living will and durable power of attorney.
A living will, said MacDuffie, allows a person to give guidance on what medical care they’d want to receive or not. “It can be very broad,” she said. “It can be as specific as saying, ‘I want to die at home, with my cat on my bed, and I want Van Morrison’s ‘Moondance’ playing in the background.’”
Durable power of attorney allows someone to name a person to make health-care decisions for them in case they are unable, MacDuffie said. The durable power of attorney can only be activated by a physician. “If they feel your illness is preventing you from being able to understand your medical decisions, then they can activate your power of attorney,” she said.
MacDuffie said the living will is not even considered until a person is at a point where there is no hope. “If you’re expected to get better, that is not a time we’d look at the advance directive,” she said.
Young said just because someone is appointed power of attorney, that doesn’t mean they have the right to make decisions for someone if they’re still able to speak and make their own decisions. She encourages someone looking at appointing a durable power of attorney not to choose a spouse or close family member.
“You want to make sure you choose a person who will truly respect your wishes, not their own agenda,” she said. “It’s very hard. Some parents cannot let go of their children.”
There is also a do-not resuscitate, or DNR, order that can be included and allows someone to determine what they want to happen if their heart stops. “It’s a physician’s order not to jump-start the heart with CPR, or use electric paddles or breathing machine,” she said.
MacDuffie said a DNR order doesn’t mean a person won’t receive all other care.
An advance directive can also allow a person to communicate their spiritual wants for when they die. “It can include funeral arrangements, an obituary if you want to write it and also whether you have any interest in organ donation,” MacDuffie said.
MacDuffie and Young encourage people to at least start a conversation with their loved ones. “It’s giving the gift of love,” she said. “It’s like saying ‘my gift to you is that I’m giving you instructions about what to do for me.’”
Hospital spokeswoman Nancy Notis said Valentine’s Day is an example of an appropriate time to have the discussion. She said 26 people visited the hospital this past Valentine’s Day to fill out the document.
An important part of having an advance directive is to constantly revise wishes as a person progresses through life. Young said part of the process is making sure family members are aware of the document and that copies are disseminated to a person’s primary-care physician and local hospital. The original copy of the document should be kept in a safe place.
“It’s important to know that you can change it,” MacDuffie said. “You might pick a power of attorney now and then in five years end up living in a different town or be married or divorced.”
MacDuffie and Young agree the hardest yet most important part of the process is starting the conversation. “Nobody wants to talk about dying, nobody wants to talk about being sick,” Young said. “But when that times happens, you want to make sure people are listening to what you would like, not what they would like.”