Monthly Archives: August 2015

Release Our Grip

I attended a seminar this week to discuss issues that affect the aging (65+) population. One of the speakers shared a story about her 90-something-year-old father who died earlier this year. Being a nurse, she suggested to the doctor during her dad’s final hospitalization that perhaps a particular procedure could help him be more comfortable. She said the doctor told her that of course they could do that but the risk to her father outweighed any benefit given his age, his condition, and the likelihood of his death in a very short time (which occurred only a few days later). She also shared that what the doctor told her next made quite an impact on her. I don’t remember the statement verbatim, but it was something like: “The angels are pulling him up by his shoulders and you are trying to drag him down by his feet.” Just hearing her rendition of it impacted me. So much so that I sat down at the computer with my Publisher program and free clip art and came up with the illustration below. (I’m not an artist, but I think it gets that doctor’s point across pretty well visually.)

Shoulders and Feet

It’s beyond difficult to let go of people we love. It’s downright painful and heart-wrenching. Even 22 and 17 years after the deaths of my Dad and Mom (respectively), I can still recall the scenes of their deaths and the emotions I felt at that time. And there are times when the span of those years seems very short, as if I just lost them. I always remind myself that I was fortunate to have had them for 30 and 35 years (again, respectively); but there are also times when I feel “cheated” as I watch my friends still enjoying time with their parents today.

But now that I know what I know about the desperate attempts to hold on to our loved ones, I have wondered if we did harm to Dad by having him airlifted from one hospital to another in a last ditch effort to keep him with us. Did the procedures forced upon his ailing body in his last several hours really do him any good? I’m certain he was not aware of any of it. And at the time, I didn’t understand what was happening. He was off in another room with medical professionals doing their life’s work. I just knew that it wasn’t looking good for him to survive and I didn’t want to lose my Dad. I wonder, if we’d really understood what was going to be done to him, would we have pursued such aggressive, invasive procedures?

He died that day, in August 1993, despite the “heroic” attempts to keep him with us. He was 66. If he had survived until now, he’d be 88. If what happened to him then were happening to him now, I know what my decision would be. And as hard as it would be for me, I know it would be better for him if I’d release my grip.

Caring Choices –They’re not easy to make. But they’re necessary. We can help you start talking now to avoid guilt and regrets down the road over the choices you may be forced to make.

Competing Agendas

Watching someone waffle between hope and despair is a heart-wrenching spectacle. Having the benefit (or is it a curse?) of a healthcare education, she can see what’s happening to someone she loves and idolizes. She is suspicious that the specialist may not be sharing all the options with her family, yet she’s hesitant to question the physician for fear of taking away the glimmer of hope she sees her loved one clinging to. Of course she doesn’t want her parent to die but she also understands that everyone does … and especially when she sees the signs so blatantly in front of her. Her agenda is to allow loved ones to cling to their hope while she prays that the doctor will soon address the elephant in the room.

The physician, she says, has never spoken of anything except another round of treatment. There has never been a compassionate discussion with the patient and family about goals beyond treatment. There has been no recommendation of a palliative care consult for pain and symptom management. This specialist’s agenda is to follow the treatment trail until it ends, either peacefully or, more likely, in a hospital as a last ditch effort to count one more day on this earth.

The spouse of the patient knows something is amiss yet she doesn’t question the physician. She and the patient are of the generation when the doctor knows best and you don’t question authority. She recognizes her husband’s decline and fears for her own usefulness when he is gone. He is her primary caregiver and her lifelong partner. Her agenda is to love him until his final breath and not allow him to know her worry for her future without him.

There are still others involved in this scenario with agendas of their own in the care of this patient and his family. Some have the best intentions but are restricted by the nature of their position. Still others may struggle with the moral or ethical question of when to share information with the patient without the physician’s authorization. (A suggestion of hospice is often overruled by reasoning such as “not appropriate,” “not there yet,” or “too soon for that.”) Some are friends of the daughter and offer suggestions and guidance based on similar paths they’ve walked. Some are professional healthcare colleagues, not involved directly with this patient, who are ready to support whatever decisions the family makes.

The most important person whose agenda is not addressed in this scenario is the patient himself. The assumption is that he’s clinging to hope for himself when in reality he may be sharing the same worries of his wife – what will happen to her when he’s gone? He is likely concerned about his daughter – “Daddy’s Little Girl” – whom he’s always supported through these kinds of losses. He may very well understand that any more treatments are going to be useless for his condition, yet he doesn’t want to take away the doctor’s hope of curing him.

These competing agendas can (and often do) occur to varying degrees in every end of life situation. The only way to end the competition of different agendas and avoid unspoken concerns, unwanted treatments, and make room for compassionate care is to talk. Talk with family. Talk with physicians, including specialists. Talk with religious advisors. Talk with friends and colleagues. Talk to whomever matters to you … but do it before things change so rapidly that the agendas are no longer relevant.

Caring Choices can help you align agendas to eliminate competition and ensure compassionate care when you need it the most. Talking about what we want as the patient, what we need as the loved ones and what we’re able or not able to do as the healthcare provider is the most valuable gift we can give each other. Talk is not cheap; it’s priceless.

Recognizing the Signs

It seems everywhere you turn there’s a sign showing us the way, urging caution, providing information, enticing a purchase, warning of danger, or providing some of other kind of assistance/information. Most signs that command attention are in red or yellow providing warnings or cautions leading us to adjust preparations, choose another path or proceed cautiously. Most of these signs are blatantly obvious, in our faces and difficult to ignore. Some are downright unsafe to ignore. When you’re on the road, a detour sign forces you to change course. Caution signs alert to an upcoming challenge or danger and one must react accordingly to protect yourself and others.

There are many signs in life, however, whose meanings are not so obviously apparent or easily followed. There are subtle signs which can be misinterpreted, easily ignored, or dismissed. The signs most difficult to recognize and follow are the signs our own bodies present when the end is nearing.

Contemplating the death of a loved one is rarely without dread. Recognizing the signs of the failing health of someone we love is difficult, even to trained eyes, but they are most often present in one subtle way or another. When my Mom was admitted to Hospice care, I was presented with a booklet written by a long-time nurse. It provides a “road map” of different signs that may be present when a loved one is within months, weeks, days and hours of death. It may seem gruesome to some but this book helped me recognize when my Mom’s body was giving me signs that she was about to depart our lives. This book, called “Gone From My Sight,” provided me with insight to know when it was time to call other family members to Mom’s bedside. [Caring Choices has given this booklet to several families who have found it just as helpful.]

As I read through the booklet after Mom died, hindsight illuminated other subtle signs that Mom’s body had been showing us for the last year of her life. Fortunately, Mom knew her body well through the lifelong course of her specific disease. She recognized the signs each time she had pneumonia before the doctors and hospitals ran the necessary tests to confirm it. She wasn’t afraid to talk about the changes she felt and where those changes were leading. She talked about death because she lived with the specter of it all her life; she understood her prognosis and what would likely claim her life. This doesn’t mean she didn’t LIVE life and enjoy it. She did. We did. And on the day of her death, I knew what she wanted and didn’t want. I could recognize and interpret the signs because that booklet and my Mom had prepared me to accept the signs. It changed my grief experience because I didn’t feel guilt or remorse for making a “wrong” decision. I followed the signs.

Caring Choices is available to help you recognize the signs, talk about the signs, and follow the signs. Blatant or subtle, signs are intended to help us. Knowing what the signs mean can help us make decisions to benefit the people we love.