Thinking Ahead About the Unthinkable

My Story

I am not afraid of death. Or grief. I feel like I live between two worlds — the world of the grieving and the world that ignores death at all costs.

My wife died suddenly of an unknown heart problem when I was in my forties. I went to work in the morning, she had her attack, and I didn’t have the chance to even say goodbye.

Because we expected to live forty more years, Evelyn and I had not talked about end-of-life issues. We were going to do that sometime in the distant future. When she died, I had to have answers for a lot of questions right away without knowing what she wanted.

Thankfully she had a sticker on her driver’s license for donating her organs, so I did not have to struggle over making the call to let someone cut into my wife’s body and take out parts. I did have to decide on my own to turn off the life-support machines.

No Promise of Tomorrow

With Evelyn unexpectedly dying at a young age, I realized that any of us can go at any time from an unknown health problem, a car accident, or slipping on a patch of ice.

So I try to live each day as fully as I can and love the people I’m with, because there’s a chance that tomorrow one of us may not be here. If you look at the obituaries in the local newspaper, you may find that 25% of the people who died are under the age of 60.

A lot of us go before we think it’s time.

I don’t know why we’re so skittish about death, as if talking about dying would cause it to happen. We also don’t like to talk about grief. And viewing dead bodies in the funeral home? Oh, boy.

The time to talk about end-of-life matters is when we’re not in cardiac arrest.

We’re all going to die. We know this. And we expect that our parents will die before us, but enough adult children die before their parents to give us pause. We want to know what our loved ones want so that we can respect their wishes.

The time to make end-of-life decisions is when we’re not under pressure. Then we have time to see how our decisions feel, and we can adjust them if we have further ideas. Sometimes what is prudent is not what our hearts really want.

Let’s say an ambulance rushes your mother to the hospital. She’s unconscious, and they ask you if you want her resuscitated if she goes into cardiac arrest. What do you say?

Your mom may have already had three heart attacks, is on oxygen, and she’d be fine moving on to be with her husband in heaven. But you can’t ask her because she’s unconscious, and they need to know now.

What Do You Have to Decide?

  • Resuscitation and extraordinary measures
    Do you want medical personnel to do everything they can to keep you alive? What if there are no indications of any brain activity? Do you want to stay hooked up to machines if they are the only way you can stay alive? Talk to your primary doctor about different levels of resuscitation, and make sure that she or he knows of your decision, as well as your family.
  • Organ donation
    My wife’s organs gave life to four women who were about to die, her corneas returned sight to someone else, and her skin tissue donation helped fifty people heal from burns. Make a decision about donating and tell your loved ones. It will save them a lot of anguish.
  • Cremation or burial
    You might be surprised to find out that your dad wants his ashes scattered in Hawaii where he was in the service, rather than buried next to his parents.
  • Make a will
    If you decide ahead of time who in your family will inherit which of your possessions, you’ll save your family a lot of infighting that could go on for years. After Ev’s death, I lined up friends for my possessions, and had someone who agreed to take care of my cats.
  • Power of attorney
    If your surviving parent is incapacitated, who has the power of attorney to make legal decisions in a crisis? It takes time to set this up, and you can’t if your parent is in a coma or had a stroke.
  • Funeral or Memorial Service
    This is a fun one. What does your loved one want to have included in his or her funeral or memorial service? My mom surprised me when she said that, among other things, she wanted Dixieland music from New Orleans because she wanted a celebration. I think she also wanted toy parrots, but I’ll have to check her instructions as it’s been twenty years since she wrote her service. She did that only because her congregation was having everyone write what they wanted at their funerals.

As for my dad, I don’t know what he wants. He’s 92, so it’s probably time that we had the talk.

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Coping with Grief: Cassie’s Story

Charley in Police UniformThis Christmas season, Cassie Rodgers will be surrounded by family and friends. There will be gifts, tree-trimming and a trip to midnight Mass. There will also be a major void and coping with grief.

Cassie, who works as an Automation/Enablement Specialist in Supply Chain Management for OSF HealthCare lost her son on Christmas Eve in 2011.

Charley Rodgers was a 26-year-old police officer, dog lover and enthusiastic outdoorsman who was generous with his time and active in everything from the Eagle Scouts to Habitat for Humanity and Big Brothers Big Sisters.

Charley, who as a Type-1 diabetic struggled with insulin issues, was patrolling for the Glasford Police Department on Christmas Eve when he died. The holiday – and life in general – would be forever changed for Cassie and her family, who will always miss his laugh, his silly pranks, and his devotion to serving his community.

“They say you deal with (a loved one’s loss) day to day – sometimes it’s breath to breath,” Cassie said. “In the early days, it’s so intense and you don’t know how to move forward. You don’t ever get over it, but you learn how to manage the pain a little better.”

Coping with Grief by Honoring Charley’s Spirit

The holiday season can lose its celebratory nature for those who have lost loved ones, but there are ways that those who are grieving can get themselves through.

Charley and Friends HikingCassie and her family are coping with grief by honoring Charley’s spirit in ways that he would appreciate, from attending midnight Mass at the church he attended to trimming the tree with ornaments collected throughout Charley’s life.

As her two children were growing up, Cassie would purchase Charley and his sister, Carlye, two annual Christmas ornaments – one with a brother/sister theme and one to represent a significant event in their lives that year.

She continues to buy yearly ornaments for Charley, observing milestones he would have marked. Trimming the tree for Cassie and her daughter has become an emotional yet therapeutic time for them as they sift through the cherished memories of Charley’s life.

Cassie says while family has been her biggest source of strength, she also gives herself permission to be alone. The advice she would give to others who are coping with grief is, simply, “Be kind to yourself.”

“Whatever feels right to you is the right thing to do,” she said. “If you want to be alone, be alone. If you want to be with family, be with family. There’s no book on how you’re supposed to do this. It’s different for everyone.”

“He’s Still With Me”

Christmas isn’t the only time Cassie celebrates her son’s memory. She makes regular visits to a tree that was planted in his name at Iowa Wesleyan College, his alma mater. She has donated funds for a Boy Scouts outreach program so inner-city youth can attend wilderness outings.

Memorial TreeShe continues to be a supporter of Charley’s law enforcement colleagues, bringing in treats on his birthday and participating in events such as the Walk to Remember, a fundraiser for the families of fallen police officers. Her porch light bulbs are always blue, a nod to Project Blue Light Illinois, which also honors fallen officers.

Cassie especially appreciates when friends – or, sometimes, even strangers – share a happy memory with her.

“I’m not afraid to talk about Charley. He’s still with me, and he always will be,” she said. “I think about how much living he fit into his 26 years.… I’m not going to let his death define me; I’m going to let his life define me.”

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Dying in America (Part I): Reflections on IOM Report

The Institute of Medicine (IOM) recently released a report entitled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.”

While the title specifies end of life care, the report itself notes that many of the recommendations would likely benefit many other patient groups. In other words, improving the care of those near the end of life requires changes that occur long before that time.

In my own work, I learned very early on that you can’t possibly do excellent end of life care if you wait until the end of life. It has to begin early on.

What is the Institute of Medicine?

It is worth taking a moment to understand who the Institute of Medicine is. This is not a government agency. It is an independent arm of the National Academy of Sciences.

The work they do is funded by sponsors of specific projects. Sometimes those sponsors are from the government, who would like expert information about a specific topic. Sometimes it comes from other institutions that provide grant funding. This particular report was funded by an anonymous individual.

Once a report is chartered (the specific charter is negotiated between the IOM and the sponsor), the sponsor steps aside. The work then becomes strictly the IOM itself. There is no investigator bias. In fact, the members of the work groups are determined solely by the IOM, as are the findings and recommendations.

Bottom line, and the reason I call this out, is that an IOM report is an unbiased report based on the knowledge of experts. There is no political agenda hidden anywhere. Given the recent debacle surrounding so-called “death panels”, this is a key fact to keep in mind.

It’s Not the First Time

Something else that is notable is that this is not the first time the IOM has published a report about end of life.  In 1997, “Approaching Death: Improving Care at the End of Life” was released, then in 2003, it was followed by “When Children Die: Improving Palliative and End-of-Life Care for Children and their Families”.

Several other reports have mentioned palliative care, such that there have been 6 reports total in the last decade that call out the importance of these issues.

The Bottom Line?

If you are a “bottom line” kind of person, the report could probably be summarized as follows:

  • Dying in America is hard.
  • Palliative care works, and makes it easier.
  • Folks don’t really know what palliative care is, but once they learn, they see its value and want it.
  • We can do a better job in education for professionals and the general public
  • We must fix the misaligned incentives that lead to unwanted treatments.
  • We have to understand what patients and families value, and align those values to the care we deliver.
  • We have to help families take care of their loved ones.

Sounds deceptively simple. The devil, of course, is in the details. In future posts, I’ll dive in to these areas more deeply.

For now, please let me know in the comments section of the blog which of these areas are of most interest to you, or which are the most troubling. I look forward to interacting on this topic!

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We’ll Walk With You; Let Life End Naturally & With Dignity

Brittany Maynard was a young wife, at age 29, and she had a horrible disease: Glioblastoma Multiforme. She was articulate, and attractive, and we all felt badly that she suffered.  She had headaches, memory loss and seizures, and she moved from California to Oregon, a state where physician-assisted suicide is legal.

She took her life, as she said she would, and the “Twitter-sphere” is all awash with sentiment about how she “died with dignity” and advanced the cause of the assisted suicide movement.

I would not presume to judge Brittany Maynard’s pain, or her suffering. I do, however, have judgments about what human dignity is about, and a certain knowledge that this woman’s pain, seizures and suffering could have been controlled with good palliative care, or hospice care.

I know this is so, because I render this care to hundreds of people every year. I know that with expert palliative care, pain and suffering is not a necessary consequence of disease, not even her disease.

There are times, albeit rare, when all our efforts short of sedating a person do not relieve his or her pain. But those are very rare times; perhaps once or twice in 500 patients this occurs.

When that does occur, we can still treat the patient with dignity, and we can offer sedation to the point where their suffering is alleviated if that is their choice.

Illness does not lessen dignity

Dignity, in my estimation, does not result because some other person judges your life worthy, or aesthetically pleasing, nor is it lost if a person deems you to be void of redeeming qualities or mired in unpleasantness. Dignity comes from the fact that we are created by an all-loving God.

That we can be treated in undignified ways is a certainty. But this is not due to a disease, or pain, or unpleasant circumstance. No, that is human judgment and behavior, which dares to place its own estimates of the worth of human life above that of our creator.

If this young woman had been in our hospice program, or our hospice home, she would have been treated with all the dignity that every person deserves. She would have had her seizures and pain controlled. She would have had the ongoing opportunity to touch many other people. She is quoted as having said, “Seize the day. What’s important to you? What do you care about? What matters? Pursue that, forget the rest.”

The sadness in all of this, is that because she feared pain, and feared seizures, and feared loss of memory, she apparently feared she would be seen as undignified. I know her pain and seizures could have been controlled.

While I do not have the power to preserve the memory of patients with neurologic disease, I do not believe that lessens their dignity.

Palliative care can add precious moments

Is it possible that she might have had more beautiful, precious, important moments in this world if she had not ended her life when she did? I believe it is highly likely.

Is it possible that with expert palliative care she could have taught us more about grace and dignity by shouldering the weight of her declining health, and allowing those of us in the palliative care community to do a better job of treating her, rather than rejecting hospice care? I believe so.

I have seen it innumerable times, in patients with far more advanced disease, even far more advanced Glioblastoma Multiforme, than was hers.

I mourn her loss. If her suicide somehow furthers the physician-assisted suicide movement, I mourn that as well. It distracts us from the focus of where dignity originates, and it perseverates the myth that pain is unavoidable.

Suicide remains a choice that is mired in the centeredness of self, cheapens our value as humans and sends the message that somehow to act on those ideals is superior to the choice that thousands make, which is to live their lives to the fullest, for as long God grants us, and never presumes to usurp that divine authority.

I believe it is a rare person who would feel it necessary to take their life if they knew their pain and suffering were able to be controlled, and that they would always be treated with the dignity that comes of being a child of God.

Peace and comfort are possible

Brittany Maynard said, “Seize the day. Live each day for what matters.”

I could not agree with her more. It is sad that she may not have felt how much more she might have mattered with even a few more days of life.

Brittany also said, “If you ever find yourself walking a mile in my shoes, I hope that you would at least be given the same choice and that no one tries to take it from you.”

No one can walk a mile in Brittany’s or your shoes, but know that if you find yourself with a terminal disease, even one as ugly as Glioblastoma, we will walk miles with you. We can prevent the pain. We can prevent the seizures. We believe each of us is beautiful because we are children of God.

You don’t lose dignity because you are ill. I have learned many beautiful lessons and seen many amazing things when life ends naturally, even in the very last moments.

God be with you, Brittany Maynard. May God be with us all.

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5 More Songs About Death

As I started to write the previous post featuring songs about death, I quickly realized there was a lot to say about these beautiful expressions of grief, loss and dying. So, here we are once again with a whole new list of songs and a little commentary to go with.

Have a song about death that holds a special place in your heart or a special story about one of the songs listed here? Leave us a comment and share!

When I Get Where I’m Going – Brad Paisley

To be honest, I have a love/hate relationship with Brad Paisley. He is one of the greatest guitarists and singer-songwriters in country music today, but he has yet to write a single album that does not have at least one song on it that makes me cry like a baby. It happens every time, without fail.

On Brad’s Time Well Wasted album, this song about what heaven would be like and what he would do when he gets there, was the one that got me.

If Tomorrow Never Comes – Garth Brooks

There’s a reason this was one song that put Garth Brooks on the map in his early days and why it is still a staple of his set list today.

Remember, tell that someone that you love just what you’re thinking of… if tomorrow never comes. It’s that simple.

For a Dancer – Jackson Browne

Those who know me can tell you that I should have been a teenager in the 1970′s; I’m a total class rock addict. Sadly, I didn’t discover Jackson Browne until a few years ago, but when I did, I became obsessed.

It wasn’t until I heard the line, “In the end, there is one dance you do alone” that I realized this might be one of my favorite songs and it was, of course, a song about death. The version I’m sharing here is the first version I heard and it is just as haunting today as it was the first time I heard it.

Missing You – Puff Daddy feat. Faith Evans

Written as a tribute to recording artist Notorious B.I.G. after his murder, this track was written and performed by his close friend and partner, Puff Daddy, with B.I.G.’s wife, Faith Evans.

Tears in Heaven – Eric Clapton

Unfortunately, Eric Clapton is no stranger to loss and grief as was made evident when he released “Tears in Heaven” in 1991. The song was written about the loss he felt after his four-year-old son fell from the 53rd story of a New York apartment building.

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