A simple form lightens the burden of end-of-life decisions on family members

  • Ute Schmidt, manager of spiritual services at Baystate Medical Center in Springfield, has watched families struggle with difficult medical decisions. That burden can be lightened, she says, if individuals plan ahead by filling out a health care proxy form. GAZETTE STAFF/SARAH CROSBY

  • “Having a health care proxy is an act of responsibility and it’s an act of love,” says Ute Schmidt. GAZETTE STAFF/SARAH CROSBY

  • Even though she is healthy, Schmidt decided last year to prepare a health care proxy form for herself. GAZETTE STAFF/SARAH CROSBY

  • Ute Schmidt, manager of spiritual services at Baystate Medical Center in Springfield has watched families struggle with difficult medical decisions. That burden can be lightened, she says, if individuals plan ahead by filling out a health care prozy form. GAZETTE STAFF/SARAH CROSBY

  • The health care proxy is a simple two-page form. Though a witness is needed to validate it, a lawyer is not. GAZETTE STAFF/SARAH CROSBY

  • Ute Schmidt, manager of spiritual services at Baystate Medical Center in Springfield, is shown in the D'Amour Family Healing Garden outside of the hospital. To her left is the Chartres-style rosette labyrinth she sometimes uses to lead walking meditations. GAZETTE STAFF/SARAH CROSBY

Staff Writer
Published: 2/19/2018 1:51:32 PM

As a hospital chaplain at Baystate Medical Center in Springfield, Ute Schmidt, 53, has watched families struggle to make medical decisions for loved ones who have become unable to speak for themselves, so she understands the necessity of a document that makes medical wishes clear.

“Having a health care proxy is an act of responsibility and it’s an act of love,” Schmidt says. “To me it is important to be an agent in our own lives.”

Schmidt is still in her 50s, and in good health, but last year she decided to make her end-of-life preferences official should the unthinkable happen. She filled out a health care proxy, a legal document which specifies that if she becomes incapacitated, her husband would make health care decisions for her.

If, for example, she were to become brain dead and her only means of survival is with the support of machinery, it will be him who decides that support should be discontinued.

Should her heart stop, she says, she doesn’t want CPR. “My husband knows that I do not want to be resuscitated.” Her fear, she says, is that should she be revived from a catastrophic event, she could be left unable to care for herself. “I just don’t want to come out of a resuscitation and be a burden.”

Both her primary care doctor and her husband have copies of the document.

The simple two-page form takes the weight of decision-making off of family and friends. Yet between 50 and 60 percent of the population doesn’t have one, says Dr. Diane Dietzen, the medical director of Palliative Care at Baystate Medical Center.

“It’s pretty surprising,” she says. “It is a pretty standard recommendation, but we do a bad job at getting people to understand that they need one.”

Every day, Dietzen says, she sees families at hospital bedsides faced with decisions they don’t know how to make, wondering what their loved ones would have wanted them to do. This, she says, adds stress to an already difficult moment and sometimes not all the family members agree. 

The health care proxy form is available to download for free on the Massachusetts Medical Society website. Some health insurance companies, like Health New England, also have a generic version of the form available for free online.

Though a witness is needed to make the form valid, a lawyer is not. And, it can be altered or revoked at any time should someone’s wishes change, Schmidt says.

While the health care proxy’s main function is to list someone who will be responsible for making health care decisions for you should you become unable to do so, the document also can be attached to a living will, a written statement about what you want for end-of-life care in the event you end up in a permanent vegetative state. Again, a lawyer is not needed to make the document valid and there are plenty of resources online with templates for people to follow. 

Another document that goes further than a health proxy form is the Massachusetts Medical Orders for Life Sustaining Treatment (MOLST), a standardized form issued by the Massachusetts Department of Public Health, which specifies whether or not a person wants to be resuscitated in the event of cardiac arrest or respiratory distress. This form is mostly used in emergency situations and must be honored by EMTs and other medical professionals. It also lists preferences for treatments, like the use of feeding tubes or dialysis. 

MOLST documents also can be found online and must be signed by both the patient and a health care provider.

Karen Jackson, an elder law attorney based in Holyoke, advises that patients who have severe health conditions fill out MOLST forms and have them with them at all times, “I want the MOLST to follow them where ever they go,” she says. “We want it to be as close to them as possible. If they go to the hospital the MOLST follows them. If they go to the nursing home, the MOLST follows them.”

It’s human instinct to not want to think about being so sick that you can not communicate your medical wishes, Jackson says. Usually people push it out of their minds for as long as possible, but even healthy patients have accidents, she points out.

Dietzen recommends that anyone over the age of 18 at least have a health care proxy. She filled one out after her daughter was born 20 years ago even though she was only in her early 30s. And when both her children turned 18 she made sure they each had one.

We plan so many aspects of our lives, why not plan for the end, too? Schmidt asks. This planning also should involve a conversation with the person named in the health care proxy, to make sure the directions are clear. “Help them understand what kinds of things are important to you, what kinds of functions are important to you, what kinds of things provide quality of life for you, so that your health care proxy has an understanding of how you would make medical decisions,” Dietzen says.

As your age and your health changes over time, those things that you value for your quality of life may change also. “This isn’t just a one-time conversation. This is an ongoing conversation.”

Lisa Spear can be reached at Lspear@gazettenet.com.

To download a health care proxy form, visit http://www.massmed.org/healthcareproxy/#.Woc2sq6nHcs.

For detailed instructions and to download the MOLST form, visit www.molst-ma.org/download-molst-form.

 


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