Tag Archives: palliative care

Letters about the Difficult Decisions at the End of Life

The letters to the editor in response to the editorial, “Care at the End of Life,”  published by the New York Times on November 24, highlight the increased attention being given to the need to enable individuals to declare end-of-life decisions in advance.

In one letter, Carolyn Conley, a registered nurse with years of experience treating cancer patients, outlined two main advantages for advance directives:

First, it makes it less likely that patients will have unnecessary, unwanted and possibly uncomfortable tests; second, it lifts the burden of medical decision-making from families during a very stressful period, allowing them to spend meaningful time with their loved ones without the additional stress of having to make these difficult choices.

In a second letter, Adina Kay-Gross, who recently lost her father to metastatic lung cancer, wrote of the experience:

Because he was allowed to call the shots, because, when given all the information, he alone chose the circumstances of his death, the end of his life was as loving, as dignified and as human as he was.

We are so grateful that my dad was spared the suffering that no one should have to endure unwillingly.

In today’s world, with a growing number of Americans caring for aging parents, the increased attention to advance care planning is welcome.

But should the focus on advance directives be aimed only at elderly and terminally ill patients?

Interestingly, neither the editorial nor any of the letters to the editor mention the notion of documenting medical wishes earlier in life. After all, no one waits until they’re terminally ill to buy life insurance, or until they’re on their deathbed to think about organ donation.

It’s time to take advance care planning one step further. We should not only be encouraged to decide matters of medical care at the end of our lives, when it may be impossible to communicate our wishes. We should take action to make these tough decisions as we enter adulthood, so that our voices are preserved in all medical situations.

Share your thoughts and join the conversation on Facebook and Twitter.

California Survey Highlights End-of-Life Problem

Most Californians would prefer to die a natural death at home, comfortable and without pain, according to a survey released by The California Healthcare Foundation last week.

Two-thirds said they’d prefer to die peacefully if suffering from a prolonged illness, with only 7% choosing all possible care to prolong life.

The problem is, that isn’t the way most Californians die.

Only 32% die at home, with 42% dying in hospitals and 18% in nursing homes. (“Other” accounts for the balance.)

And, given the way most medical facilities work, most of the 60% whose lives end in hospitals or nursing homes receive many more tests, surgeries and procedures than they would have wanted.

Why aren’t Californians dying the way they want?

Because only 23% have recorded their end-of-life preferences in writing.

Even though 82% say it’s important to do so.

Why?

That’s a complex question.

41% say they have “too many other things to worry about right now.” 26% “don’t want to think about death or dying.”

Of course. We all understand those reasons.

But we also know that, historically, creating an advance medical directive has been complicated, confusing and costly. Finding the right forms, consulting lawyers or notaries, knowing where to store them — those obstacles all made advance directives just too hard for most people to tackle on their own.

Not anymore.

MyDirectives.com makes creating advance directives simple, clear and free. You get to choose where you’d prefer to be. What kinds of end-of-life treatments you’d want to receive and which you wouldn’t. You also get to designate several people who can make those decisions for you if you aren’t able to make them yourself.

When you’re done, your universal Advance Digital Directive (uADD™) will be securely stored online. Only the loved ones and caregivers you authorize will have access to your wishes.

You’ll then have the peace of mind that comes with knowing that, at the end, your loved ones won’t be left wondering why you didn’t let them know what you wanted them to do.

Like the families of 82% of today’s Californians.

The complete California Healthcare Foundation survey results can be found here.

Why Would Physicians Specialize In Palliative Medicine?

Why would physicians specialize in palliative medicine?

After all, palliative care focuses on relieving symptoms, not on curing illness. And, doctors want to prevent and/or cure illness, right?

This recent article in the Journal of Palliative Medicine provides an insight into one doctor’s thinking. It turns out that a personal experience with a dying grandparent taught this doctor the value of compassion and expertise in end-of-life care.

And, he’s not alone.

Palliative medicine only became a board certifiable medical specialty in 2008. Since then, young physicians are choosing the new specialty in large numbers. One reason is that hospice and palliative care programs are becoming more broadly recognized as effective settings for treating serious medical conditions. Another is that the young specialty gives younger doctors an opportunity to take on significant responsibilities earlier in their careers. One challenge? As this San Jose Mercury News article tells, older patients often find it more difficult to relate to younger physicians.

A new generation of physicians choosing to enter a specialty that didn’t exist a decade ago is good news for the American health care system. Studies continue to show that hospice patients not only experience improved quality of life but also longer survival than those treated more aggressively.

As palliative medicine is practiced more broadly, more adults will undoubtedly choose this approach to end-of-life care in their advance medical directives. MyDirectives.com offers a free, secure, simple way for adults to create advance directives and decide about their end-of-life options.

The good news is that more and more specially trained physicians are going to be available to treat patients and their families with skill and compassion.

A Blogger’s Advance Directives Journey

The typical blogger doesn’t focus on advance medical directives.

Maybe you’ll find an occasional post here or there.

But Dia Osborn isn’t a typical blogger.

Her blog, “The Odd and Unmentionable” is subtitled, “Considering Dying and Other Curious Things.”

Over the past few weeks, Dia has been tackling the difficult issues surrounding advance directives.

She started off Part I with this: Confession: I haven’t done my advance directive yet.

Why? As Dia says, this stuff is “scary and confusing.”

She goes on to remind the reader that if you’re over 18, “this sucker is a good thing to have.” You should read the rest. It’s very good.

And, Dia was just getting started.

In Part II, Osborn gets into definitions, like, what are the various components of a advance directive? This article provides great information, presented with wit and insight. Don’t miss it.

By Part III, Dia is ready to dive into the details. She focuses on an important question: where can you find good advance directives forms? She lists five sources and describes what she sees as Pros and Cons of each. One of those five is MyDirectives.com, a site with which we’re affiliated. Dia’s thorough, objective review of the options is a very valuable service. We highly recommend checking this piece out.

Part IV’s title poses one of the key questions about advance directives: Will They Be There When We Need ‘Em? There’s nothing more important than loved ones and caregivers being able to quickly access an up-to-date directive in an emergency. Dia found three services that meet this important criteria. MyDirectives’ universal Advance Digital Directive™ (uADD™) is the only one that offers this service for free.

Finally, in Part V, Osborn recaps what she’s learned. Like, it’s a good idea to take it slow. She realized how little she and her partner (whom she calls, “the hubster”) actually knew about the many choices modern medical technology raises. Maybe most importantly? Going through the process with a loved one led to a major surprise:

But now I’m discovering there’s an additional…and even more profound…benefit to the hubster’s and my conversations: They’re improving the quality of our life and relationship right now. I’m not kidding. We’ve been together for twenty-three years and we’re learning things about one another we never knew before. Plus, each of us is coming up with unique questions…and insights…and fears…and strengths…that the other gets to learn from, too. The sense of alliance and trust we already had is getting deeper as we go.

We totally have each other’s backs.

Dia’s series has chronicled a fascinating personal journey that we all can benefit from. And, it’s not over. She promises to discuss her personal advance directive choices in Part VI.

We look forward to that!

Thanks very much for so generously sharing your experiences with us, Dia!

Update: In Part VI, Dia talks about her own advance directives choices. In Part VII, she talks about “the hubster’s,” with his permission, of course, noting that, like everything else, dying is about relationships.

Why Should Young People Care About Advance Directives?

Why should young people care about advance medical directives?

An advance medical directive is a way for an adult to tell family and medical providers the kinds of treatments s/he would want in an emergency and to tell everyone who will speak for them in case they’re unable to speak for themselves.

Most of the time, we think that these are the kinds of decisions only older adults need to care about.

But, the way we see it, there are three good reasons for young people to care about them, too.

Help Your Family – Young people help their parents and grandparents to do things that are good for them all the time. How many have helped their parents or grandparents quit smoking? Gotten them to exercise? Taught them how to use computers and smartphones?

Plenty.

Fact is, young people often take the lead in helping their families live in the new digital age.

And now that there’s a free online universal Advance Digital Directive™ (uADD™) available at MyDirectives.com, young people can make sure their parents, uncles, aunts and grandparents let everyone know their end-of-life care wishes.

Help Society – Everywhere we look today, young people are leading social change. Two of the most important changes we’ve seen in America in the last 20 years have largely been the result of young people’s actions: recycling and seat belt usage.

Americans used to throw everything “away.” Then came the rising energy costs of the 70s. Enter recycling. At first, nobody recycled. But, once young people started learning about energy and the environment, recycling soared. Kids just weren’t going to let their parents throw stuff away that could be reused. Young people led, everybody benefitted.

Seat belts are another example. Gen X and Millennial children were raised in seat belted car seats. Highway fatalities plummeted. Yes, there were laws, but kids were there every day, making sure their parents buckled up. Once again, young people led, everybody benefitted.

Now we have both soaring healthcare costs and thousands of people dying in ways they would never have chosen.

One expert calls this, “dying badly.”

What’s dying badly? Studies show that while most people would prefer to live out their final days at home, surrounded by loved ones and kept comfortable by palliative care specialists, up to 75% of Americans die in a hospital. And, roughly 20% die in an Intensive Care Unit, getting treatments and procedures that can’t possibly help them.

Why? Because it’s the way things have been done for the last 50 years, “the path of least resistance.”

The cost? In 2010, the government spent over $50 billion for the last two months of end-of-life care for Medicare patients.

Something has to change.

Why can’t young people lead the way again, so everybody can benefit?

Help Yourself – It’s hard for any of us to think about our own death. It might be hardest for young people. Statistics say that this year over 25,000 people between  15 and 34 will die of accidental injuries. Many will receive medical care that does nothing to prolong their lives. Very few will have advance directives.

Why? One reason is that, until MyDirectives, there wasn’t a free, simple, secure way for anyone to complete a uADD™.

Young people now have a way to help their families, help society and help themselves by being taking the lead in spreading the word about this important social movement.

Why not start by creating your own advance directive and then make sure that everyone you know has created one, too?