Living With Dying articles

There is perhaps no place where end-of-life care decisions become more poignant than in the emergency room and intensive care unit of the hospital.

Janice Narey, a Barnet resident who works as an ICU nurse at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, has seen her fair share of family drama.

“It’s really agonizing sometimes to see what people are going through,” Narey said. “We’ve seen instances where a patient has their wife of 60 or 70 years sitting with them. It’s agonizing. It’s such a gray area.”

Advanced directives, Narey said, “come into play a lot.”

“A fair amount of people have them,” she said. “Some people come in and they don’t have them and families don’t really know what their wishes would be.”

If a patient doesn’t have an advanced directive appointing a power of attorney for health care, the medical team speaks to the person who is deemed to have the highest standing in the order of next of kin. In general, the spouse is first, children have co-equal standing second, and parents and siblings come next.

In cases where no decision maker has been appointed, those standings may not reflect what’s in the best interest of the patient.

“Sometimes, you might be dealing with a family who you can see that there are interactions that don’t quite measure up. Maybe this person has children but has been estranged from the children for years. And legally they’re the ones that can make the decision, but it isn’t going well,” Narey said. “We have social workers and care managers. And that’s their role – to meet with these families.”

In really difficult situations, they may also call in the risk management department. “They have all these legal people in that department who can help steer us in making decisions.”

But that kind of in-the-moment communication takes time, especially when it is fraught with emotion, family dynamics, and legalities.

“Instances like that can really prolong things for the patient because people can’t make up their mind,” said Narey. “It’s another thing that’s painful for the nursing staff because you feel like you’re beating people up and you just want people to have a peaceful death.”

Another issue crops up when the patient has made their wishes known, but the paperwork is not available to medical personnel at the moment they need it.

“There have been instances where we didn’t know the patient wanted to be a DNR [Do Not Resuscitate] and so we resuscitated them. And then the family came in and gave us the piece of paper and made them a DNR for the future. But if you don’t have the paper and the family doesn’t say it and you haven’t talked to the patient, then you’d have to do everything you could for the patient. It’s all that legal stuff.”

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GLOSSARY AND RESOURCES

DNR – Do Not Resuscitate – States that you do not wish to receive CPR in the event of cardiopulmonary arrest

POLST (New Hampshire) / COLST (Vermont) – Physician / Clinicial Order for Life Sustaining Treatment – States under what circumstances you wish to receive medical interventions including intubation, antibiotics, artificial nutrition, and more

According to Shawn LaFrance, the DNR and POLST/COLST are “the information you might put in an advanced directive and turning that into portable medical orders.”

Activating advanced directives – A medical professional must activate the advanced directives and place them in a patient’s medical record, based on their clinical judgment that the patient is no longer capable of making their own health choices

Durable Power of Attorney for Health Care – The person you appoint to make your medical decisions in the event that you are unable to make them for yourself. You can appoint co-agents if you wish.

Living Will – A written statement of your end-of-life care wishes. In some states this may be used as a generic term, in others it may refer to specific documents.

ONLINE RESOURCES

The Conversation Project – Download any of their three Starter Kits at www.theconversationproject.org.

Vermont Ethics Network – An organization working to increase awareness of ethical issues, values and choices in health care at www.vtethicsnetwork.org.

New Hampshire’s Advanced Care Planning Guide is available at www.healthynh.com and look for the “Advanced Directives/Healthcare Decisions/POLST” link.

Vermont’s advanced directives are available at www.healthvermont.gov and look for the “Advance Directives” link.

U.S. Living Will Registry – Once your advanced directives are complete, you can register them at www.uslivingwillregistry.com to make them available to health care providers anywhere in the country. There is a fee for registration, however some health care providers or other agencies provide a discount for their members. There is no discount available for New Hampshire residents, however the Vermont Department of Health makes registration free for Vermonters.

Every state has its own laws surrounding advanced directives, so it is important to complete and sign paperwork that complies with your state’s laws. Some states observe reciprocity with some other states, but that is limited. If you spend significant time in a different state or move your residence, it is advisable to fill out new advanced directives for the other state.