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Understanding the high cost of saying goodbye
Ten percent of all health care dollars are spent in the last year of life, that's $270 billion. Those final days are when the toughest, most costly decisions are made, and emotion can easily overrun decision making.
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Janet Dean wasn't supposed to spend her final days like this.
"She must have had 40 lbs. of fluid. Her face was all swollen. She had the breathing tube in there that was taped to her face," says Richard Dean, Janet's husband.
Gone was his sweetheart -- the bathing beauty he met as a lifeguard back at Orchard Beach in 1964. This 44-year marriage between the daughter of a New York City cab driver and the son of a New York City bus driver was nearly over.
"At the end, she wasn't the woman I loved. She wasn't the Janet that I lived with. She was this organism that was struggling on the table," he says.
This wasn't the plan. Doctors had told Janet in the spring of 2009 the pain in her stomach was actually stage-four ovarian cancer. She and her husband quickly -- easily -- made a pact. The pact lots of us make when we think about death. Richard remembers his wife's words.
"Don't extend this more than it needs to be. If I don't have a good chance at life, I'll happily accept my death," says Dean.
So how did they end up here -- where the desire for a quiet, unplugged death unravels and a loving husband breaks a final promise? Dean says he sees it now -- as his wife lay there in the ICU -- she was dying. But he couldn't see it then.
"I think what happens is when you are in the midst of a medical crisis. You actually don't know where you are. You don't have any sense of, 'Am I a day away from dying? Is recovery possible?'" says Dean. "We actually don't know that."
Dean had promised his wife he wouldn't pull out all the stops to keep her alive. That she would die at home surrounded by her family, not like this -- in an ICU hooked up to machines.
"I was her caregiver. That I would be there. That I knew her wishes. That wasn't the way she wanted to be. And that wasn't the way she wanted to leave," he says.
Again, he did what many people do when hope starts running out -- he looked to Janet's team of doctors and nurses -- counting on modern medicine to rescue them both.
"Medical people find it hard to deal with that. They've got to do something. We can do this, we can do this, we can do this," he says.
It was a Hail Mary, a super rare antibiotic. So exceptional that Dean says one course of the drug cost $20,000.
"The doctors said if we do this, it would give her a chance to get back to where she was, which was maybe a 3-5 percent chance of recovery," he says.
Yes, a 3 percent to 5 percent chance. The very definition of an extraordinary measure where the doctors, the hospital, the patient, the insurers together take a flier on a crazy expensive attempt to help one person live a little bit longer... maybe. From a policy perspective it's madness. But if it's your mother or your son, or the wife you promised would die in her own bed surrounded by family, then it's different. Right?
Doctors administered the first shot. It didn't work.
"I looked into her eyes and she looked into my eyes and we connected. And I told her I loved her. I got her best effort at a smile," says Dean. "And I knew."
To this day, three years later, Dean regrets his decisions. The rounds and rounds of chemo, the slippery slope to the ICU, and especially the shot. He thinks about wasted resources, whether some other person could have actually used those antibiotics. But mostly, he blames himself for letting the situation spin out of control -- for losing sight of what his wife wanted most.
"I needed to have done more, done better. It was a traumatic time for me. That image stays with me," says Dean. "The rational side of me understands that I did the best I could, but feel like I could have done better."
The way Janet died cost her husband. And it cost us. The biggest chunk of health care spending takes place in the last year of life -- $270 billion. People are at their sickest and emotion drives cost more than medicine. Some health care people believe we're not too far from a time when the health care system will do a better job letting us know when it's time to let go.
For Dean -- in his final days he's going to look his doctors in the eye and demand to know when it's his time. At least, he says, that's his plan.
Richard Dean is a member of the Patient and Family Advisory Council at Johns Hopkins Hospital.
We were neighbors of Rich and Janet Dean for 23 years. They were our best friends. Rich just spent the weekend with us. I can't imagine the pain he must have endured the year Janet was so sick. We visited them (we now live in Kentucky; they lived in Maryland) while she was sick and shared many memories of the "good ole days". What great friends they were; we will never forget them and the great times we shared raising our kids together and the fun we had eating out and doing just the simple things of life. She died far too young and they all suffered way too much. May God bless the entire Dean Family. Love you guys, Bill, Susan and Allison
Your story “Understanding the high cost of saying goodbye” sounded like you had been eavesdropping on my friend’s life. She was a veteran traveler who, in her last tour of duty, volunteered to teach in East Timor for the second time. While in East Timor, she came into contact with the parasite giardia which causes diarrhea. My friend’s body rejected everything she ate. In five years, medical science was unable to beat her illness. She was subjected to every medical test imaginable, more than once. She had more than one round of chemo-therapy. Her health continued to deteriorate through two strokes until she finally contracted an infection and passed away in her own bed, but not before a heartbreaking stay in the hospital. While there, the only way she could express her wishes was to struggle against her family’s attempts to make her comfortable. Her family was left to interpret her actions: Are we hurting you? Are the drugs making you act in a way we don’t understand? Are you refusing treatment? After one especially difficult night, her husband and two adult children decided to take her home. She died the next morning. My friend’s family was left as traumatized by the experience as the man who lost his wife to ovarian cancer in your story. However, their trauma, unlike your story, had nothing to do with money. Did you think that your story would be less obscene if you interviewed someone who had lost a loved one?
Your story lacked a fundamental understanding of the human spirit. Despite her inability to speak, my friend was lucid until one or two days before she died. Previous to this, she fought for her life for five years, through extreme discomfort and pain. Her fight to stay part of this world was to the death, and no one had the right to curtail her fight. Not for expediency’s sake, and certainly not to save a few dollars. Not even for mercy’s sake. For patients like my friend who cannot voice their desire to be left to the Will of the Creator, it is left to the family to interpret their loved one’s wishes. In these situations, doctors, nurses, caregivers, the family, do the best they can. Human instinct is to take over the fight when the patient falters. In the absence of a legal document that states clearly the patient’s wishes, the human instinct to preserve life predominates. The sanctity of human life follows even unto death. Ask the military.
One final comment about your story: Fuck the money.
I see a fundamental difference between these two cases. From the information provided, your friend's diagnosis and therefore her prognosis were never well understood. Stage 4 ovarian cancer has a pretty well understood trajectory, although there are prognostic variables. The wife in the feature had also expressed her wish not to be subjected to aggressive measures if they did not have a reasonable chance of improving her condition. Questions of cost have to do both with the burden of suffering to the individual and to the proportionality of the monetary cost to the benefit. It is not in anyone's interest to spend money on expensive therapies that do not work. Your friend's suffering can certainly be seen as a heroic effort to live. I am saddened that someone living so fully should die despite all of her efforts and the efforts of those who cared for her.
This is a tragic story and a common one in every hospital. As a nurse I struggle to understand these situations without simply passing blame, though there is blame to go around. We in health care first have an obligation to be honest - compassionately honest but without holding anything back or weighting the evidence to suit our interests. I see this, also, in some sense as a religious failing, by which I mean a failing to see our lives from a religious perspective. Life involves struggle but that struggle should not be solely to ward off death at all costs. It should be, in part, a struggle to integrate death as a positive fact in our understanding of life.
This is a decision that I have made for myself long ago. I hope that it will be carried out. The doctors better have a greater than 60% chance of the treatment working or I do not want it. I will not go bankrupt trying to get an extra year out of my life.
I have talked to my doctor about starting a cruise line called Terminal Cruises. A party ship that offers medical support and pain management in the form of drugs (legal or illegal) and booze. The family can sail along for one last celebration of life instead of hanging around the ICU from the results of cancer treatments. The day that I run out of money, bury me at sea.
At some point the cost of medical treatment to society exceeds any future benefits that I could ever possibly return to society. Does it make sense to spend 20 years of your life working only to owe every penny that you had made for medical bills?
I think that this is a personal decision but I think that the expectation that one must live on at all costs is wrong. Unlike a preemie that has their whole life in front of them, I know that I will not be the next Albert Einstein and I accept my fate.
The sad part is that most of these decisions are based on selflessness. Will I be able to let my wife go when the time comes or will I do the same thing and keep looking for miracles to spend a few more minutes with her? I am hoping that I will be lucky enough not to find out. I do realize that one day this could be me in this story.
