Writers Circle: End of life decisions

OBLIGATIONS TO THOSE WE LEAVE BEHIND

Dan Langfield

I think it was a randy old Jamaican philosopher who first observed that 'Everybody want go to Heaven. Nobody want go tonight.”

It has almost a lilting Caribbean rhythm to it. I can imagine a soft breeze and steel drums.

But the truth is that it carries a very pragmatic fact. We have a great deal of difficulty with death even the talk of it.

We find the idea of leaving this vale of tears inconvenient, unnerving and totally distasteful.

We are more than a little upset that all we've spent a lifetime achieving can be abruptly halted perhaps without any warning.

Now that's intimidating!

All religions, one way or another assure that if we follow all their rules we are (pardon the expression) dead sure that we're going to a better place.

I've always held the slight suspicion that the Catholic 'Beatific Vision” might get a little boring on a 24/7 basis.

I'm also not entirely sure that as a Muslim martyr I'd be comfortable with 70 virgins. I don't like crowds.

Then there's always the intellectual theory that heaven was a promise promulgated by religions to keep the poor from rebelling against the rich based on the theory that if you were a - fill in the blanks - and did what the church told you was right, then a golden palace etc. was waiting for you when you checked out.

With these kinds of uncertainties it's not surprising that we really don't want to face the immutable fact: We are all going to die.

But the fact that it's immutable does not release us from some very serious obligations to those we leave behind.

Power of Attorney and health care directives are not costly and can go a long way in helping love ones make some incredibly difficult decisions when you may not be able.

Things like not driving the family into bankruptcy over end of life actions that might extend your life but not the quality of it.

Things like crushing guilt folks might have about putting you in a care facility when they can no longer physically care for you.

Things like a will so family members are not suing each other over property divisions.

It might be the kindest, most loving thing you could do for those you care about to take some time, while you still have all your marbles, to make sure you don't add to their grief by leaving a boatload of problems for them.

It could be the most appreciated part of your legacy.

I was introduced to a remarkable young lady recently who worked as a volunteer at an Iowa City Hospice.

In her presentation she discussed dignity therapy. She would sit down one on one and ask hospice patients a series of questions ranging from what they most enjoyed in their lives to what they had conquered or hoped to achieve.

She would tape and transcribe the conversations and then play them back to the patient later.

It was done 1 on 1 without family or friends to allow the entire focus of the effort to be on the patient.

What an incredibly good idea. The prospect of death in the very near future can tear a person's self worth to shreds. Any effort to maintain dignity is a noble undertaking.

I have nothing but respect for hospice and the consistently kind, strong, thoughtful people, staff and volunteers who provide for their patients at home, in a hospital or an institution.

Hospice workers provide an invaluable bridge for the dying to help navigate the fear that leaving brings to us all at the end.

They focus on the patient to filter out angst, anger and desperate frustration on the part of family and/or friends that leaves the patient confused. Patients may feel guilty they are causing folks they care about worry and pain.

God love and protect all hospice workers.

They are far better people than me.

' Dan Langfield served as Executive Director of Linn County Medical Society for 17 years and consults for the Medical Staff of Mercy Hospital in Iowa City.

PRESERVING INDIVIDUAL DIGNITY

Emily White

'Could you tell me a little about your life history, particularly the parts that you either remember the most or think are the most important? When did you feel most alive? What are your most important accomplishments, and what do you feel most proud of or take most pride in? What have you learned about life that you would want to pass along to others?”

I have been asking these questions, among others, to hospice patients for the past six months. These questions come from a psychosocial intervention for patients nearing end of life called Dignity Therapy. Canadian physician Harvey Chochinov, developed Dignity Therapy to help people facing significant medical challenges to maintain a sense of meaning and purpose.

Dignity Therapy provides a safe space for patients to express how they want or need to be perceived, reflect on their life, and extend their influence beyond death through their words. The Dignity Therapy conversation is recorded, transcribed into a text and then edited into a narrative. The end result of Dignity Therapy is a 'Generativity Document,” unique for every individual. I have had the privilege of talking to 14 hospice patients and creating 14 'Generativity Documents.”

As a medical student researcher, I look at the narratives to identify individual patient's perceptions of dignity. There are specific themes and subthemes in the framework such as: continuity of self, role preservation, generativity/legacy, maintenance of pride, hopefulness and others. By analyzing a patient's narrative, I am able to understand ways to help maintain their dignity.

For example, Patient X's dignity was intimately connected to his sense of togetherness with his wife and family. Being together provided him with continuity of self: 'I'm thankful for their help. Now I can't walk, I can't do anything, but they help me. If it weren't for their help, I'd have to go to a nursing home, and I want to be with my family.”

Patient X's emphasis on the importance of togetherness was also illustrated in his hopes and dreams for his family: 'They need to follow the family pattern. They need to stay together.” Knowing that togetherness is fundamentally important to Patient X and his sense of self informs Patient X's health care providers about his needs for his quality of life, to be with his family.

Knowing what is important to someone, what trade-offs they are and are not willing to make, and how they see themselves (i.e., not seeing them as a patient, but as a mother, veteran, farmer, etc.) at the time of terminal diagnosis facilitates a more dignified existence throughout the dying process. My hope is that this kind of research will encourage health care providers to attempt to understand what is important to their patient before illness diminishes dignity, and to use that understanding to inform care decisions to help maintain their patient's dignity.

' Emily White is a medical student at the University of Iowa Carver College of Medicine and a dignity therapist with Iowa City Hospice.

TALK OPENLY ABOUT YOUR WISHES

Michelle LeCompte

'I am not afraid of death. I just don't want to be there when it happens.” Woody Allen got that right. We might accept that death is a part of life, but we're pretty squeamish about the details.

Yet the more we look away, the more we do ourselves - and those we love - a great disservice. When we're able to talk openly about what happens at the end, we have an opportunity to endow the final days of life with purpose and peace.

An advance directive is a step in the right direction. You can use advance directives to document your preferences regarding end-of-life medical treatment and to name someone to make decisions when you're unable to do so.

Advance directives don't cover everything. They tend to address the medical aspects of your care, but not the emotional, personal and spiritual dimensions - the vital elements that define you and your quality of life.

This is the stuff we don't talk about so easily. If your life were shortened by serious illness, what would matter most to you? What would comfort you? What would worry you? What would you want your family to know?

The Coda Alliance, a non-profit organization that helps people prepare for the last stage of life, has put together a card game called 'Go Wish” to help families talk about questions like these. The cards describe how people want to be treated, who they want near them and what matters to them. Families and friends place the cards into three stacks: Very important, somewhat important and not important to me.

How would you sort the following? If I had a serious illness, I would want to:

' Say goodbye to important people in my life

' Have human touch

' Remember personal accomplishments

' Take care of unfinished business with family and friends

' Be mentally aware

' Prevent arguments by making sure my family knows what I want

' Know how my body will change

Would the people who love you sort them into the same order for you? For themselves? You'll kick off an important conversation and learn a lot about yourself in the process.

You can see (or download) all 36 cards, including one wild card, at www.gowish.org. Use them as is, or as inspiration for your own. You may want more than one wild card - maybe you want to read, have your pet with you, be surrounded by music.

The earlier you start the conversation, the more likely it is you'll be able to express and honor your wishes. You may even be able to accomplish things in advance, like that unfinished business with family and friends.

Despite our attempts to deny the inevitable, we're all going to be there when it happens to us. But conversations like these will help us live - and die - with honesty, intention and grace.

' Michelle LeCompte is a principal at Helio, a company specializing in health content and strategy.

THE RIGHT TO END OUR OWN LIVES

Steve Chamberlin

'We're just a drain on the body politic.” That's what my grandmother often said to me almost 30 years ago, while she was residing in the independent living portion of a retirement community.

She needed more assistance as her memory issues and dementia worsened, and spent the last seven years of her life in a nursing home. She was not able to articulate her thoughts as well by then, and I sometimes wondered what her slightly younger self would have said about that existence.

Some years later, Parkinson's disease and dementia began to take a toll on my father. He was one of the smartest and most self-confident people I've ever known. It was harder to see those things taken away from him than it had been to see similar changes in my grandmother. I understood better how difficult my grandmother's decline was for my mother and her sisters.

My mother did an incredible job of caring for my father at home, but eventually he needed more care than she could provide. After a heart attack and a couple hospital stays, he went to a nursing home and it appeared unlikely that he would be able to come back home. After only ten days in the nursing home, my father's heart gave out and he passed away during the night. When I relate this story people sometimes say, 'He was lucky.” I tend to agree with that, as he was otherwise left with an existence that I know he didn't want.

Last year my father-in-law moved to a care center because of a deteriorating hip, and his dementia became more pronounced in an unfamiliar environment. My wife and her mother visit him regularly and do an amazing job of showing him and talking with him about familiar things. Some days he smiles and they feel like they made a difference; some days they aren't sure that he even knows they were there.

As you spend more time at a nursing home, you see the family members of other residents. They are doing the best they can to brighten their loved one's day, and it isn't easy. There aren't a lot of road maps to follow, although there are health care resources and support groups that can be of assistance.

I have learned that our world tends to shrink as we age. That can happen gradually (as it did for my grandmother and father), or more abruptly (as it did for my father-in-law). Either way, we should recognize that those changes probably will occur and have frank discussions about what sort of care we would want (and not want) and plan accordingly.

We should prepare an advanced directive to express those wishes in writing. Several in the Writer's Circle were interested in being able to terminate our own lives when we no longer have sufficient quality of life. At this time, such wishes would not be carried out in Iowa as we do not have a law similar to Oregon's Death With Dignity Act. I'd like to see similar legislation in Iowa and other states. I'm not sure what choice I would make about the end of my life, but I'd like the ability to make that choice. We should also revisit our plans as our thoughts might change as we age, or new research might change the trajectory of some diseases.

It's not our place to judge someone else's quality of life. Not everyone will make the same end of life decisions, but we should all take action to make our decisions known and we should have the legal right to choose to end our own lives in certain circumstances.

' Steve Chamberlin volunteers with the Senior Health Insurance Information Program, which has increased his interest in health care issues.

DEATH CAN GIVE LIFE MEANING

Les Deal

'I never knew how to live until I came here to die,” said an elderly, blind gentleman of St. Joseph's Hospice in London. 'Let me tell you, doctor,” said an 83-year-old Hospice of Marin patient, 'dying is the experience of a lifetime.” 'I think I was meant to come here,” says Lillian Preston's final letter from St. Christopher's Hospice, 'so that, at last, I could experience joy.”

We accept changes all our life, but when dying is the issue it gets our attention differently. This kind of acceptance means we embrace it, own it, rest on it, trust it - there is no plan 'B”.

Etty Hillesum, who later would die in the Auschwitz concentration camp, wrote, 'The reality of death has become a definite part of my life; my life has, so to speak, been extended by death, by my looking death in the eye and accepting it, by accepting destruction as part of life and no longer wasting my energies on fear of death or the refusal to acknowledge its inevitability.

It sounds paradoxical: By excluding death from our life, we cannot live a full life, and by admitting death into our life, we enlarge and enrich it.”

Years ago The Gazette ran an interview with a 102-year-old man who said to 'embrace all things, even those things that slap you in the face.”

Death gets our attention mostly because of its uncertainties. We put off accepting death until finally, cornered, we give it our best shot.

Nine years ago, I got the news that I needed triple-bypass surgery. I was a 'walking time bomb,” as my cardiologist said. He said if I had a heart attack, even if I was in the hospital, I would most likely not survive. That got my attention.

I was an active and 'healthy” person. I played racquetball two to three times a week and, in fact, last played two days before receiving the news.

What a letdown to go from feeling great to learning you have a heart problem that could be fatal. After many hours of denial and feeling despondent, I decided to change my outlook. I saw how lucky I was. From that moment on, I looked forward to the upcoming operation and the physical therapy that followed. Acceptance was not about tolerating the ordeal, it was about welcoming it into my life.

The operation was a success and within 12 weeks, I was back playing racquetball (and still do). As if that wasn't enough, over the next four years, I had four cancers (bladder twice, thyroid and skin); each treated and today I show no cancer.

Throughout these events, I experienced a deepening joy. I felt thankful; had a deeper appreciation for people and things; I felt my life was a bonus. It felt like life had taken additional components, like a puzzle, and I felt more complete.

I was a new man with a new and deeper excitement and zeal. If I died, it would be with no regrets.

These last nine years have been the best of my life (71). I do not wish for cancer or any other disease, but if there were no other way to gain what I received, then I would choose the same path again. The road was worth it. How I live far outweighs how long I live.

Oh, another bonus, I am a better husband.

' Les Deal is a retired remodeling contractor living in Cedar Rapids.