Registered Organ Donor? Rest Assured Your Care Won’t Be Compromised

This week, we’re sharing a video that tackles one of the most prevalent myths related to organ donation—that medical care efforts may be less than heroic if doctors and nurses know the patient has signed an organ donor card.

In this clip—created by URMC’s Finger Lakes Donor Recovery Network, in recognition of National Donate Life Month 2013— you’ll hear upstate New York health care providers’ thoughts and experiences with organ donation and transplantation, illustrating how that myth is far, far from the truth. What’s more, some families go on to say that being able to donate their loved one’s organs is the one silver lining to come out of a nightmarish personal storm.

Research Shows Organ Donation Might Help Families Grieve

There’s no way around it: Funerals are hard. But when your loved one has made a final gift that can save lives and bring healing to other families, something positive can come out of the pain.

“There’s a great deal of support for organ donation in the Rochester community,” said Rob Kochik, executive director of Finger Lakes Donor Recovery Network (FLDRN), a division of URMC.

“Even so, we often find that some of the same people who are quick to express support at the idea of donation have not actually taken the step to officially register themselves. It’s probably because they haven’t spent much time considering their own potential to leave a legacy of hope.”

We spoke to Kochik to learn more about organ donation—and the incredible power one person can have to change lives.

Scripts: Not to downplay the very real struggle that grieving families face—we know time is the true healer of deep wounds—but is there any research showing that organ donation can help surviving family members make sense of their loss?

Kochik: There’s definitely evidence behind the idea. At FLDRN, we offer support to organ donors’ family members for a minimum of two years following their loved one’s gift. A number of these donor family members go a step further and serve on our FLDRN’s Donor Family Advisory Committee, giving us insight were incredibly grateful for. Who best to learn from than previous donors’ family members?

In a recent survey, family members told us they were motivated by the prospect that “something positive could come out of [their] loss,” that “someone else would have a better life,” and that, in a way, “[their] family member would live on.” This idea of paying life forward, and having something beautiful come out of their tragedy, is certainly compelling. It can be something encouraging to cling to in those first difficult days, months, even years.

Scripts: That’s a great way to describe it. But why do you think some people “never get around to” thinking about organ donation?

Kochik: Naturally, none of us likes to think about our loved ones dying, much less to consider our own death.

Even so, it’s inevitable that each of us will die at some point—so it’s really important that we make this very personal decision and share our wishes with our family members. When we make the choice ourselves, and document it, we spare our family members from being burdened with one more emotional decision at a time when they’ll likely be overwhelmed. We know this firsthand; family members of loved ones who’ve taken the time to elect to be (or not be) donors repeatedly tell us they are very much relieved that they didn’t have to make this potentially exhausting decision.

Scripts: I bet many people don’t think of it from that angle, but it’s a fair point. On another note, though—can donor families and transplant recipients ever meet up?

Kochik: Great question. Transplant recipients often send thank you cards and letters to their donor’s family members; it’s one small way to express their appreciation for a very big gift – life. And in the other direction, donor family members often enjoy sharing some more information about their loved one with transplant recipients; it’s a way for them to see that their loved one’s story is being told, and they’re living on. Periodically, when both parties wish to meet in person, FLDRN helps coordinate that.

Scripts: What a special thing. Before we wrap up, tell us: Of all the myths that muddy the issue of organ donation, which one would you most like to see cleared up?

Kochik: Hands down, the most frequent reason people tell us they’ve not signed up to be a donor is because they’ve (wrongly) assumed that their age or medical condition would render them ineligible.

That couldn’t be further from the truth. The fact is, that there are absolutely no age restrictions to become an organ donor – and each donor’s medical condition is carefully evaluated at the time of donation. Everyone is encouraged to enroll in the registry, no matter their age or medical history.

To learn more about organ donation and transplantation, please visit the Finger Lakes Donor Recovery Network website, or the Facebook page for the bLifeNY awareness campaign, developed by the URMC Division of Solid Organ Transplantation and Hepatobiliary Surgery. Or call FLDRN at (585) 272-4930.

Would You Still Have a Voice If You Were Silenced? The Role of Health Care Proxies

From when the alarm blasts us awake until we drift off to sleep at night, the days are chock-full of choices—not only snap judgments, but those that require deeper thought. With the hundreds of decisions we face daily, who needs to sort through yet another one?

You do if you haven’t begun to consider how you’d like your medical care to proceed, in the event that you become ill or injured and are unable to then make or express your wishes.

For expert advice that might just save your loved ones a lot of heartache, we consulted Dr. Richard A. Demme, URMC associate professor of Medicine and Humanities.

Scripts: There seem to be several things people refer to when they talk about end-of-life planning—advance directives, living wills, and health proxies, to name a few. Can you provide a big-picture view here?

Demme: It certainly can feel a little confusing, which might contribute to the off-putting nature of this important subject. My own need to know more about end-of-life planning was sparked in my first week as an attending nephrologist, when a patient asked me for a lethal injection. That was over 20 years ago—I’ve been picking this stuff apart since. But thinking about this serious, somewhat tricky topic is essential.

The things you mention all fall under the same end-of-life planning umbrella. Advance directives, generally speaking, are instructions specifying how a person wants her health care to proceed should she become incapacitated and unable to communicate her wishes. A living will is an older type of directive outlining treatment instructions. For example, in an advance directive, you can choose to withhold certain life-support therapies, or ask for a trial period of treatment.

A health care proxy is a person who is supposed to interpret your wishes about health care decisions. The form appointing this person is also called a health care proxy. Proxies are broadly empowered in New York State, which means there’s more flexibility when doctors communicate with them than when referring to a printed document, which can’t talk back and clarify.

Scripts: So is end-of-life planning really for everyone? Kids, the young, the healthy?

Demme: If you’re over 18, you can and should name a health care proxy. There have been historical court cases—long, ugly battles—about which medical treatments should be continued for people in persistent vegetative states. Do you think a court would make a better decision for you than your own chosen proxy? Of course not. Your proxy, someone you trust to make decisions on your behalf, could ask to continue or stop treatments.

There are no fees or lawyers in appointing a proxy. Remember to choose wisely—not someone who’s consistently unavailable, or someone who just can’t live without you. Surprisingly, about 30 percent of people might not choose their spouse/partner to make their health care decisions. You need to count on your proxy to be able to know when to continue aggressive treatment, but also when to say Enough, now let’s concentrate on patient comfort. The hardest part about picking is figuring out who will make decisions according to your wishes, even if they personally would rather make a different choice.

Scripts: Some of the legal documentation asks that end-of-life decisions be put into words. How can we keep language broad enough to prevent potential confusion? We’ve heard that you don’t want to have been so specific with your wishes that you inadvertently complicate situations you couldn’t have anticipated. Are there good online resources you can point us to?

Demme: Try to avoid such popular boilerplate language as “extraordinary measures,” and “natural death.” Don’t say, “Do everything.” Due to the absence of agreed-upon medical definitions for these terms, sometimes we doctors are left with question marks hanging over our heads. Instead of unhelpful buzzwords, find precise language to help you articulate your message. You can write things like “If I am no longer able to recognize my family, and am not likely to recover, I would want treatments stopped.” Or, “I would prefer to try to eat by mouth, even if there is a risk of aspiration pneumonia.” But, it’s difficult to forecast all of the medical situations you might encounter, so it is more useful for physicians to know who you want us talking to when you can no longer tell us your wishes.

One excellent resource is this easy-to-use website (developed by a team of URMC medical students!) that fleshes out these topics a bit more fully and allows you to generate online, using their forms, some of the documentation we’re talking about now.

Scripts: So in summary, what’s the single action you’d recommend that readers take today?

Demme: You could probably guess, but here goes: Please consider appointing a health proxy—and don’t forget to communicate your health care wishes to him. Do it now.

Dr. Richard A. Demme has been a board certified nephrologist for over 20 years. He is a Fellow in the American College of Physicians. He chairs the URMC Ethics Committee, and is the co-director of the Division of Medical Humanities and Bioethics. His interests include ethical issues in transplantation, end-of-life care, medical decision making and informed consent, and the history of medicine.

Final Gifts: Organ Donation Could Help Families Grieve

There’s no way around it: Funerals are hard. But when your loved one has made a final gift that can save lives and bring healing to other families, something positive can come out of the pain.

“There’s a great deal of support for organ donation in the Rochester community,” said Rob Kochik, executive director of Finger Lakes Donor Recovery Network (FLDRN), a division of URMC.

“Even so, we often find that some of the same people who are quick to express support at the idea of donation have not actually taken the step to officially register themselves. It’s probably because they haven’t spent much time considering their own potential to leave a legacy of hope.”

We spoke to Kochik to learn more about organ donation – and the incredible power one person can have to change lives. Read on.

Scripts: Not to downplay the very real struggle that grieving families face – we know time is the true healer of deep wounds – but is there any research showing that organ donation can help surviving family members make sense of their loss?

Kochik: There’s definitely evidence behind the idea. At FLDRN, we offer support to organ donors’ family members for a minimum of two years following their loved one’s gift. A number of these donor family members go a step further and serve on our FLDRN’s Donor Family Advisory Committee, giving us insight were incredibly grateful for. Who best to learn from than previous donors’ family members?

In a recent survey, family members told us they were motivated by the prospect that “something positive could come out of [their] loss,” that “someone else would have a better life,” and that, in a way, “[their] family member would live on.” This idea of paying life forward, and having something beautiful come out of their tragedy, is certainly compelling. It can be something encouraging to cling to in those first difficult days, months, even years.

Scripts: That’s a great way to describe it. But why do you think some people “never get around to” thinking about organ donation?

Kochik: Naturally, none of us likes to think about our loved ones dying, much less to consider our own death.

Even so, it’s inevitable that each of us will die at some point – so it’s really important that we make this very personal decision and share our wishes with our family members. When we make the choice ourselves, and document it, we spare our family members from being burdened with one more emotional decision at a time when they’ll likely be overwhelmed. We know this firsthand; family members of loved ones who’ve taken the time to elect to be (or not be) donors repeatedly tell us they are very much relieved that they didn’t t have to make this potentially exhausting decision.

Scripts: I bet many people don’t think of it from that angle, but it’s a fair point. On another note, though – can donor families and transplant recipients ever meet up?

Kochik: Great question. Transplant recipients often send thank you cards and letters to their donor’s family members; it’s one small way to express their appreciation for a very big gift – life. And in the other direction, donor family members often enjoy sharing some more information about their loved one with transplant recipients; it’s a way for them to see that their loved one’s story is being told, and they’re living on. Periodically, when both parties wish to meet in person, FLDRN helps coordinate that.

Scripts: What a special thing. Before we wrap up, tell us: Of all the myths that muddy the issue of organ donation, which one would you most like to see cleared up?

Kochik: Hands down, the most frequent reason people tell us they’ve not signed up to be a donor is because they’ve (wrongly) assumed that their age or medical condition would render them ineligible.

That couldn’t be further from the truth. The fact is, that there are absolutely no age restrictions to become an organ donor – and each donor’s medical condition is carefully evaluated at the time of donation. Everyone is encouraged to enroll in the registry, no matter their age or medical history.

Work at URMC? Join URMC’s Campaign 4 Life

URMC and Finger Lakes Donor Recovery Network are teaming up to launch the URMC Campaign 4 Life, a month-long initiative during October to raise awareness about organ donation and transplantation and to ask each URMC employee to take action by declaring their consent to be an organ donor by enrolling in the New York State Donate Life Registry. The goal of the campaign is for 65 percent of URMC employees – there are nearly 15,000 – to either simply confirm they are already registered OR to become a new registered donor by completing an enrollment form. Please click here to participate in the URMC Campaign 4 Life survey. It takes less than 30 seconds.

To learn more about organ donation and transplantation, please visit the Finger Lakes Donor Recovery Network website, or the Facebook page for the bLifeNY awareness campaign, developed by the URMC Division of Solid Organ Transplantation and Hepatobiliary Surgery. Or call FLDRN at (585) 272-4930.

Organ Donation: Myths and Misconceptions

Organ donation. It can be a delicate topic, and one many people avoid talking about – especially families. But, should something happen to you, having a frank discussion about your wishes in advance can make a decision later much easier for your loved ones.

Of course, the topic is fraught with misconceptions – some of which might prevent people from considering donation at all. To celebrate Donate Life Month (running all April), Rob Kochik, executive director of URMC’s Finger Lakes Donor Recovery Network, explores some of these all-too-common myths in the video below.

You can learn more by visiting the Finger Lakes Donor Recovery Network (FLDRN) website at www.donorrecovery.org.

More Ways to Commemorate ‘Donate Life Month’

FLDRN is joining hospitals and transplant centers in the Finger Lakes, Central and Northern New York regions as they celebrate Donate Life Month. Together, they’re honoring and the hundreds of thousands of donors and recipients whose lives have been touched by organ and tissue donation across the country.

Locally, many events are planned, including flag raising ceremonies, butterfly releases, and the annual Rochester River Run/Walk fundraiser right in Rochester’s Genesee Valley Park.

Get involved, and be a part of this important conversation!

Can You Really Die From a Broken Heart?

Sappy cards.  Impossible dinner reservations. Rose bouquets for twice their typical cost.

If you’re annoyed by the hype of the Valentine’s holiday, take heart: There might be something worth celebrating after all. Scientists continue to find ways that nurturing relationships, like a supportive marriage, confer health benefits to the heart – and conversely, how stress and grief from love lost can take their toll on it.

In fact, one recent University of Rochester study showed that wedded people who undergo coronary bypass surgery are at least three times as likely as their unmarried counterparts to be alive 15 years later. On the flip side, more and more scientific evidence is mounting, making a strong case for the long-romanticized notion of people dying from “broken hearts.” It turns out, in rare instances, suffering a devastating loss can literally kill you.

To understand how emotions affect the heart, we sat down with cardiologist Dr. Leway Chen, who specializes in caring for patients with heart transplants and artificial hearts.

To learn more about the advanced heart health care and treatments offered by URMC’s cardiologists, click here.

Left Behind: How Family Members Make Sense of Suicide

When a loved one commits suicide, uncertainties abound.

Many wonder: Was the suicide a selfish act – or an act of desperation? And should loved ones treat it – and grieve it – the same way they would any other premature death or loss?

Worse, to add worry to the mix of emotions: Can the depression that led to the suicide be inherited? And if so, to what extent does it run in families?

With the stigma and silence surrounding mental health issues, it can be difficult for families to find the strength, support and straight answers they need to properly heal. To help, this week we’re sharing an interview featuring expert Dr. Yeates Conwell, who has studied suicide and suicide prevention for much of his career and is well-aware of the complicated and exhausting grief that often follows such acts (or attempts).

The interview — conducted by a radio program called Viewpoints, and which aired on more than 300 stations across the country — explores how suicide affects families. You can hear Dr. Conwell’s insightful comments via this link . (Please note: Scroll down to click the red “PROGRAM” link. The player will bring up a recording of the Viewpoints show in its entirety; Conwell’s interview begins about a minute or two into the program.  This interview was produced by MediaTracks Communications.)

Conwell is vice chair in the Department of Psychiatry, and co-director of the Center for the Study and Prevention of Suicide at the University of Rochester School of Medicine and Dentistry. In addition to teaching and clinical care, he directs a multi-disciplinary program of research in suicidal prevention, with a special emphasis on later life. In May, he will receive the 2011 American Foundation for Suicide Prevention Research Award for his work on suicide in the elderly.

Heartache: When Holidays Hurt

Twinkling lights. Sweet aromas flooding the kitchen. A bell choir.

When you’re grieving, the trappings of the season can almost taunt you; ironically, the traditions, laughter and general cheer can also rekindle painful emotions like longing and loss.

We spoke with marriage and family therapist Dr. Carol Podgorski to learn how you can find – or even give – encouragement and support during the holidays. She offered insight below:

1. Accept that grieving takes energy. Just like a long day of fighting mall crowds or rolling out sugar cookies, grief can drain you. Keep in mind that you might be more tired than usual, and allow yourself the right to “bow out” of invites or activities that you don’t have the stamina for. It’s OK to decline a party and just curl up on the couch with a good book and a mug of cocoa.
2. Don’t feel guilty if you wind up having fun. It’s OK if you find yourself laughing at a joke, enchanted by a concert, or simply relishing good company. Consider how your lost loved one would want you to feel – they’d likely be thrilled that you’re finding ways to enjoy the holiday.
3. Be flexible about traditions. Some people find that certain traditions – especially if they are strongly associated with a lost loved one – may need to be put on hold (or stopped altogether); other people find these same types of traditions to be extremely comforting, since they serve as a chance to honor their loved one’s memory. Do whatever feels right for you and your family. There’s no right or wrong approach.

Want to hear more strategies for navigating the holiday season with a heavy heart? Watch the video clip below.

Suffering grief or loss? Strong Family Therapy Services can help. For inquiries or to schedule an appointment, call intake coordinator Erin Kohler at 585-275-0320.