Category Archives: Stories

National Family Caregivers Month

Do you care for a loved one? Perhaps an aging parent?

You’re not alone.

According to the Caregiving in the USA study by the National Alliance for Caregiving and AARP, nearly 50 million Americans are helping an adult loved one care for themselves.

This month, we here at MyDirectives thank and celebrate you for your dedication and sacrifice as a part of National Family Caregivers Month. The National Family Caregivers Association writes:

In 1994, the National Family Caregivers Association began promoting the celebration of family caregivers during the week of Thanksgiving. President Clinton signed the first presidential proclamation in 1997 and every president since – Democrat and Republican alike – has issued an annual proclamation appreciating family caregivers. As interest grew in family caregiving issues, National Family Caregivers Week became National Family Caregivers Month.

New to caregiving? Or have you been caring for a relative for a while? Here are some resources to help you out:

Don’t forget you need to make sure you’re taken care of as well. Our partners over at CareConscious have a support plan to help you do so as well as resources available for you. Check them out here.

Don’t Let the Biggest Battle be Over Who Handles Your End-of-life Care

It may never strike someone that a veteran’s greatest battle is not war itself but subsequent battles he must fight in order to return to everyday life. Dennis Henley served in the U.S. military for 26 years before retiring and being diagnosed with Alzheimer’s disease. Prior to retiring, Dennis had a living will but he did not have an advanced medical directive to ensure he received medical treatment the way he felt comfortable. In a blog post for the Alzheimer’s Association, Dennis Henley discussed the steps he’s taken in what he calls his “greatest battle”:

“I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.”

Dennis identifies it perfectly – preparing signing an advanced medical directive is not about feeling guilt over the inevitable. Deciding to sign an advanced medical directive is about fostering the conversation with family; with friends and with the network of support we all have in our lives. Whether a military serviceman about to be deployed overseas, a patient diagnosed with Alzheimer’s or none of the above, the conversation that grows from these life situations allows for a mutual understanding amongst everyone in your life who care how you’re cared for.

How has your life been impacted by Alzheimer’s? How has it changed your outlook on life? Join the conversation on Facebook and Twitter.

Photo: From Henley’s blog post at the Alzheimer’s association. L-R: Henley; Gen. Franks; Henley’s son.

Crossposted from MyDirectives.com

Advance Planning on TV

As we enter the fall season of television premieres, we wanted to look back at a couple highlights from last season. Last year, two primetime medical dramas, Saving Hope (NBC) and Private Practice (ABC) explored scenarios where planning ahead and creating an advance medical directive would have changed the care a patient received.

In the episode of Saving Hope entitled “Heartsick”, an ex-wife and fiancée grapple with who should make the decision about ending the life support of a man, who is important in both of their lives. The ex-wife and fiancée along with the man’s doctors find themselves in front of a judge. Although the judge decides that the relationship status of the ex-wife and fiancée are essentially equal, he grants the ex-wife the right to choose the patient’s fate. Had there been an advance medical directive in play, as the characters learn, they may not have needed to end up in front of that judge and the emotional battles could have been avoided. Watch what happened here:

On Private Practice’s episode “Drifting Back”, a patient with a terminal heart condition lands in the emergency room. The twist; he is gay and hasn’t signed an advance medical directive naming his life partner as his healthcare agent. Because he didn’t have an advance medical directive and the partners weren’t legally married, important healthcare decisions, including the use of life support, became the legal responsibility of the patient’s estranged father. Watch to see what happened as the doctors struggle with what the law requires of them in the situation:

We can learn a lot from what we watch on TV. While Saving Hope and Private Practice show us the stories of fictional characters, the issues they struggle with are often very real. And in the case of planning ahead and creating advance medical directives, both television episodes speak volumes about how important it is to sit down with family and friends to have these important conversations about our medical wishes, regardless of age or life situation. And they can help us start the conversation with our own families and friends. The value of the conversation about advance care planning is priceless. It’s a conversation that can make all the difference.

Did you see these episodes? What did you think? Were you able to relate to the story? Let us know if you catch any other shows this fall taking on advance care planning. Find us on Facebook and Twitter.

Crossposted at MyDirectives.com

End-of-Life Lessons From Doctors

Doctors deal with death a lot more often than those of us who don’t practice medicine. For many specialists, it’s part of the job sometimes, and it inevitably colors the way they ultimately deal with their own deaths.

So when it comes to their end-of-life decisions, do doctors die differently than the rest of us? 

Ken Murray, a clinical assistant professor of family medicine at the University of Southern California, examined this question in a thoughtful piece on Zócalo Public Square. His observations certainly provide food for thought. Murray highlights survey findings from a Johns Hopkins Precursors Study:

According to the study, 65 percent of the doctors (or former medical students) had created an advance directive, i.e. a set of legal documents spelling out in advance what sort of end-of-life care they would like. Only about 20 percent of the public does this. When asked whether they would want cardiopulmonary resuscitation, or CPR, if they were in a chronic coma, about 90 percent of the Johns Hopkins doctors said no. Only about 25 percent of the public gives the same answer.

I discussed the tense, and often tragic, circumstances that surround many of the treatment decisions made in hospitals. Often, I noted, family members or medical staff effectively override the wishes of a dying patient. The studies I’ve found on this suggest that family plays a particularly big role in taking things in an unintended direction,especially when there’s nothing in writing[we added the italics].

Now that’s quite jarring. But also not entirely surprising. From our perspective, the question is, what do you do with this information? And we like Murray’s constructive conclusion on this matter and his advice for patients:

We don’t like to think about death. But that avoidance is one reason so many Americans fail to arrange an advance directive, even when they are severely ill. When patients of mine would come to my office accompanied by a family member, I often asked the patient how he or she wanted to die. I didn’t do it because the patient was on the brink of death, or even sick. I did it because I wanted the patient to think about the question and also to make sure that a loved one got to hear the answer [again, the italics are ours]. Unwanted futile measures, prolonged deaths, and hospital deaths remain commonplace in America and many other places. But they don’t have to be. It just requires our doctors and, no less, the rest of us to come to terms with the inevitable.

Crossposted at MyDirectives.Com