Revoke -- An Update

Last month I wrote about Adele and how her family's anguish played out in their decisions to enroll in hospice and then revoke the benefit a day later. I speculated that Adele would die an uncomfortable death in a nursing home, unless the home panicked (as they are prone to do) and returned her to the hospital.

I've had some follow-up about Adele. She left the hospital and moved to a nursing home. About ten days later, at the family's insistence, she was brought to the emergency department. They felt she wasn't doing well. The ED did its job, finding no changes of any substance, and she went back to the nursing home. A week later I discovered that she was once again a hospice patient  -- enrolled with another program, not with mine -- and on their inpatient hospice unit. She died there several days after admission.

So I advocated for hospice, the family accepted and then rejected my advice, and finally accepted it again but went with a different hospice program? What's the take-home message here? Should I be gloating that they finally saw things my way? Angry that they rejected my program in favor of another? Depressed because I wasn't a good enough palliative medicine specialist to get them to stick with their first decision?

I vote for "none of the above." Instead, I think Adele and her family teach us two important lessons.

The first is that bearers of bad news do so at that their peril. "Don't shoot the messenger" applies equally well to warfare and the breaking of bad news -- not that there aren't other parallels, by the way. I think one reason Adele's family chose another hospice the second time around was because it was so hard for them to get there. 

The second is that, faced with the devasting realization that nobody actually does live forever, each patient-family unit carves its own trajectory and proceeds at its own pace. The process can't be hurried. Sometimes I think that our job is to shield families, to protect their emotional space while they wrestle with the tough decisions they'd rather not have to make. Creating a safe, non-judgmental context for patients and families is part of the work I do every day.

Revoke

We all know in our heads that no one lives forever, but it's a different matter altogether when our loved one is dying in front of our eyes. For adult children facing hard choices about their desperately ill parents, the dynamic is often filled with grief and pain.

Recently I was asked to see Adele, a woman in her eighties who'd sustained a large stroke involving the left side of her brain. It was clear to all that her massive brain damage meant she'd never function independently again. And then there was the cancer. An abnormal admission chest x-ray prompted a CT scan that showed a nasty-looking nodule in her right lung. Other tests convinced Adele's primary medical team that the cancer had spread from another source. The consulting oncologist recommended comfort measures instead of aggressive diagnostic efforts. I was asked to consult. Adele was unresponsive and not arousable, holding her eyes at half-mast, and breathing through her mouth.

Adele's husband was distraught to the point of paralysis. "My daughter will be here soon, " he kept saying. When she arrived, it was obvious there was no love lost between parent and child; it seemed that every third or fourth sentence she said was a variation on the theme of, "Dad, be quiet." With some difficulty we talked about hospice as a means to help Adele die comfortably and with dignity. Adele's daughter accepted my advice to start down the comfort path. She and her father signed the papers, her mother was moved to the hospice part of the hospital, and staff worked to align her treatment orders with the exclusive goal of reducing pain and suffering.

The next day, all hell broke loose. Both father and daughter announced loudly that Adele wasn't getting good care and that they had moved to hospice way too soon. They wanted out, and they wanted out now.

It's actually a simple matter to quit hospice. You sign a couple of forms, and -- abracadabra! -- you are right back in the conventional health care system. Adele moved back to a regular medical floor. For the next ten days, various doctors once again noted her dismal prognosis and the near-zero possibility of improvement. The stomach specialist, who gets paid to put in feeding tubes, wrote an eloquent note about why it would be immoral to put one in Adele. All to no avail. The family insisted that Adele would soon recover and be like her old self. At the family's request, the social worker found a nursing home that would take her, and off she went. 

Now, I haven't visited Adele's nursing home. But I'd wager that its care doesn't compare to that provided every day on our hospice unit by nurses who want to be there and who specialize in end-of-life care. So the decision to revoke couldn't have been based on care delivered, at least not when assessed objectively. But why would this family make a decision so obviously not grounded in objective reality? Why give up a good thing like hospice? Why, as nurses and physicians wondered aloud, did they want to torture her?

The author Francine Russo recently wrote, “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.” I believe Adele's family had trouble with emotional separation. I think their anguish at the thought of losing her blinded them to a loving and compassionate assessment of what she needed when she needed them to put her needs first.

Adele will die at the nursing home, unless she develops an abnormal vital sign that panics the facility into sending her to the emergency room. In that case, she'll die in the hospital while facing the full brunt of modern, disease-oriented medicine. Either way, it will be an entirely preventable tragedy. We need to put our loved ones first.

Medicate, Medicate

Families of hospice patients often complain that their loved one is "over-medicated." Dad isn't arousable and isn't talking, so it must be the morphine. If only we would turn down the drip, Dad would wake up and interact, or so the reasoning goes. A variation of this theme is the request that we reduce the pain medicine while family is visiting so that they can chat with Dad, then turn it back up later once everyone's left so that he can sleep. One of our many jobs is to gently explain that it's the disease, not the drugs, that is responsible for the patient's decline. We can't manipulate our patients' level of consciousness the way families often think we can.

 

A central tenet of hospice is that we don't hasten our patients' death, nor do we stand in the way of death. So we're sensitive to the charge that we're giving too much medicine when what we are trying to do is assure our patients' comfort. We give drugs the way Goldilocks might -- not too much, not too little, but just right.

Not long ago, I ran into the opposite problem. Anne was in the last phases of her colon cancer, admitted to our inpatient unit and, by the assessment of every staff member, comfortable and pain-free. "Not so," said her two adult daughters, "we want her sedated even more. Our mom is a stoic. She wouldn't report pain to you. But we know she's in pain, and we want her to have more morphine." Anne was intermittently conscious, and she had blinked when the daughters asked her if she was in pain. That was their evidence. But her face and body were relaxed, and her breathing was easy -- all signs that tell hospice workers their patients are pain-free. The staff felt they were being railroaded into giving more medication than they felt was justified. A nursing supervisor recorded a conversation at four o'clock in the morning with one daughter. "Are you telling me you want euthanasia for your mother?" she asked. "Yes" was the reply.

I spent a couple of hours with the daughters over the last two or three days of their mother's life, talking in great detail about how we assessed patients and why we thought she was comfortable. I explained how we balance giving enough medication to relieve suffering while trying to avoid any hastening or acceleration of the dying process. The daughters didn't buy it. Right up to the end, when Anne was deeply unconscious and skipping breaths for 30 seconds or more, they clamored for more drugs. Our staff was convinced that Anne died peacefully, but there was no peace for those she left behind.

What motivates families to make a request like this? There are cynical explanations -- a son needs to get back to work, or there's a lot of money to be inherited. It's hard to believe that getting a will into probate faster would motivate a child to ask for euthanasia for a parent, but I suppose it's happened now and then. Or there may be an ambivalent relationship between players in the end-of-life drama. Perhaps there are unresolved issues stemming from childhood. Now that the child can, in effect, exercise parental power over his parent, it may be tempting to turn the tables once and for all. That, too, has probably happened from time to time.

But I believe the reason lies most often with the intense pain that people feel when their loved ones are dying before their eyes. Pain...and impotence, the inability to change the outcome, to protect a loved one from the finality of death. If I have no power to prevent my wife from dying, then I'll exercise my power to prevent her from feeling any pain at all. Both hospice workers and families share the goal of relieving suffering. But because we work in the fishbowl that is America's ambivalence about dying -- think of the "Obama death panel" insanity -- hospice people also must be sensitive to charges that "all you do is give them morphine and kill them." That need to balance is irrelevant to families grieving the loss of a loved one in advance of the loss itself. And therein, I think, lies the seed of the conflict we had with Anne's daughters. I know of no easy solution to the "medicate, medicate" dilemma other than to educate, educate.

Emergency

She was 92, desperately ill, and screaming at the top of her lungs. I was rounding in the hospital when I got the call from the residents in ICU -- could I come right away? Of course I could. It's hard enough dealing with critical problems when you've got some physician miles under your belt. But it's truly terrifying for a young doctor, just months out of medical school, to face a problem that doesn't easily reduce itself to lab tests and x-rays. I've long felt a responsibility to not leave physicians in training alone to stumble in the darkness.

She lived in a nursing home, which shipped her to the emergency department because she was "altered." In other words, she was acting crazy. The ED did its job. The staff quickly determined that she probably had a serious infection, that her kidneys had stopped working, that her lungs and heart were perilously close to failure, that her blood would no longer clot. She was bleeding from her rectum and possibly into her head. Her odds were slim to none. Family members quickly gathered before she was sent upstairs to ICU, yelling and thrashing on the gurney. The nurses responded by tying her wrists to the bedrails.

Blessedly, the family's first question was, "Do you have a palliative medicine doctor available?"

The residents and I quickly confirmed the ED's findings. Even before I briefed the family, I talked the residents through some basic moves -- small amounts of a powerful pain medicine called fentanyl, safe when the kidneys shut down, to treat the obvious pain; an antipsychotic drug, haloperidol, to calm her and hopefully allow us to remove the restraints; and a drug to reduce the gurgling noise she made with every breath, chosen carefully since some medications of that type can worsen delirious behavior. We decided to keep the family in a separate room until their loved one was less uncomfortable. Why should their last visual memories be of a person so obviously not at peace? But it took too much time for things to happen. No one was moving at an acceptable speed. Dying patients who are not getting life-sustaining treatments sometimes fall lower on the ICU priority list. I finally spoke to the nurse in charge: "This is an authentic palliative care emergency, just as surely as a cardiac arrest is an emergency. We need these meds to be given, and we need that to happen now." My voice was under control and I stayed calm, but there was no doubt about what I expected would happen next. Drugs appeared and were given quickly. After a few minutes we could already see that our patient was calmer, still awake but not nearly so agitated.

Ten family members and I talked in a conference room smaller than most walk-in closets. I reviewed the test results and the prognosis. Unlike so many families I deal with, this family closed ranks quickly around a unanimous opinion -- treat for comfort, and allow a natural death. I returned to the unit, worked through some dosage adjustments with the residents, and asked the nurses to untie the dying woman. About 45 minutes after she arrived in the ICU, our patient was ready to receive visitors. The family crowded around the bed, saying their good-byes. A little later, our 92-year-old mother, wife, and grandmother closed her eyes, and three hours after she came through the doors of the ICU she was gone.

If we have nothing else to offer, it seems to me we can at least offer the possibility of a smooth transition from this life to whatever may or may not follow. In medicine, an emergency means a situation that just can't wait. A delirious elder at the end of her life, obviously suffering with a life expectancy of minutes to hours -- if that isn't an emergency, what is?

Angel

It disturbs the natural order of things when parents bury their children. Any death is a tragedy in its own way -- "it's never enough time," I find myself saying to families over and over again -- but especially when the dying one is as innocent as Helen, a 20 year old whose soul detached and headed skyward today. Helen lived with a rare and untreatable cancer for almost two years, never uttering an unkind word or, as far as anyone knows, expressing a trace of anger about having been singled out unfairly.

I'm always astonished to see photos of my patients taken before they became ill. The contrast between the pictures and the reality of the dying person is striking. It shouldn't have mattered, of course, but our team couldn't help noticing that the pre-cancer Helen was breathtakingly beautiful.

They say that every dysfunctional family is dysfunctional in its own way. The adults in Helen's life were anything but. Her mom in particular had a history of substance abuse, and in the last three weeks of Helen's life Mom was arrested twice because of loud threats and hints of violence. Our hospice staff worked tirelessly to relieve Helen's physical symptoms -- terrible pain, vomiting, double vision caused by the spread of the cancer to her brain -- and also to hold the family together. I made weekly visits, partly to keep an eye on Helen but mostly to give a booster shot of hope and confidence to Mom and her ex-husband (Helen's biological father) and her current husband. My message to Mom was simple and constant -- you have to hold it together for Helen's sake.

A couple of weeks ago, another relative who helped care for Helen told me that Helen was an angel who'd been sent to earth to fix her mom. Unable to do that, Helen had to leave. That faith, the relative told me, kept her going as she labored along with our hospice team to keep it together for Helen's sake. We all search for meaning as we confront the unspeakable. It occurred to me that I had no better explanation for this tragedy. Today at the bedside we looked down at Helen's body, now free of tubes, washed, and wearing a pretty young girl's dress. The same relative said to me: "A few days after I told you about my angel theory, I was alone with Helen and I told her what I believed. She opened her eyes, looked at me, said 'You're right,' and closed her eyes again."

What do I make of a moment like that? The rational, scientific, doctoring world I inhabit has no room for angels in its explanatory framework. Yet it seems an injustice to label Helen's comment as an expression of delirium and nothing more. As I accompany the dying and their loves ones on a journey filled with tears, it helps me to believe that, every once in a while, I'll encounter an angel.

Hugs and Kisses

I met Molly when she told her internist she was tired of antibiotics and her orthopedic surgeon to take a hike. Well into her eighties, Molly had the litany of diseases common to many older folks --a bit of heart failure, a touch of kidney trouble, problems with diabetes that had shown up just fifteen years earlier -- but two things stood out. She didn't have a diagnosis of depression. And she had chronic pain -- lots of it. She'd been tried on a variety of pain medicines and, two years previously, had settled down with a fentanyl patch. This seemed to help, and she tolerated it without difficulty, but still she fell down and shattered her hip in multiple places.

Thus began the all too familiar downward spiral in the hospital. Surgery to fix her hip was postponed because she had diarrhea that had to be evaluated. In the meanwhile, she was placed in traction -- effective in reducing the pain from her fracture, but since it limited her ability to roll from side to side it made her back pain worse, which was why she had the fentanyl patch in the first place. Then her stool test came back positive for "c diff" -- Clostridium difficile, a nasty bug that's become a big problem arguably because we doctors haven't been smart about antibiotic choices. Now the surgery was postponed indefinitely while the infectious diarrhea was treated with IV antibiotics. But the infection didn't clear. Molly still had diarrhea as well as terrible pain from her broken hip. Her daughter Sara came to visit from out of town. They both told Molly's orthopedist that she didn't want surgery but did want to die. They told the internist they wanted to stop the antibiotics because Molly wanted to die. He felt torn between his desire to respect his patient's autonomy and what he felt was his professional obligation to treat her illnesses.

Molly's daughter Sara and I talked about the medical difficulties her mom faced. Sara was hoping that hospice might offer a way out.

This was the context when I went to Molly's bedside, pulled up a chair, put down the siderail and took her hand in mine. Those of us in hospice work are often trained in the "breaking bad news protocol," which outlines a series of steps to take. By sitting down and reducing our social distance, I'd taken the first step. The second step is to ask the patient something like, "What's your understanding of your health situation right now?" By having the patient talk about what she believes to be true, the theory goes, you can tailor the way you deliver the bad news you must deliver.

I asked Molly about her illness. I thought she would talk about her hip, or maybe her chronic pain. But instead she turned to me and whispered: "many bad things...so much wasted time...much suffering." It was time to cast the protocol aside. I asked her, "What do you want?" Pushing her chin to the ceiling, she replied, "To go home." "Do you mean heaven?" I asked. She nodded.

There comes a time when you are faced with an impossible situation, and you have to decide whether you will help. Hospice is not about hastening death, and I do not work in one of two states in which physician-assisted suicide is legal. But those are abstract technicalities to a person in pain. So, with Molly's ice-blue eyes fixed on my face, I told her that the power to go home was a power she already had. She could simply stop eating and drinking. After a little while she was unlikely to experience either hunger or thirst. I assured her that we would be there for her. 

Her gaze softened, she whispered, "Thank you," and she pulled my entwined hand to her mouth and kissed it. In that moment I knew I had made the right decision. I excused myself to talk with Sara. She confirmed that this was her mother's wish and that she supported the decision. She asked, "Can I hug you now?" and I said yes.

Antibiotics stopped, traction went away, and pain medicine was adjusted. In just a few days, her face relaxed and her breathing easy, Molly went home.

Was this a hastened death? Well, it could be argued that neither Molly nor Sara would have necessarily figured it out on their own. But sometimes you are faced with an impossible situation, and you have to decide whether you will help.

The Mouths of Gift Horses

Like many physicians, over the years I've received gifts from patients now and then. These sometimes have been occasioned by forces other than gratitude. When I was first in practice, I innocently inquired of a Mormon mother whether her faith permitted me to immunize her children. She gave me a copy of The Book of Mormon because she wanted me to comprehend clearly that, as she put it in her inscription, "Mormons immunize their children unless they don't." Point taken. Another early patient gave me a wheel of cheese. To this day I don't understand why -- but it was delicious.

There's frequently a deep subtext in the doctor-patient relationship, often expressed as a fault line where the tectonic plates of lay and medical culture collide.* This week three different families gave me a gift. Each illuminates a different part of how physicians, patients, and families struggle together over complex decisions at the end of life.

The first was a gift card for a local restaurant. The accompanying note by a grieving son thanked me for my patience in dealing with his mother and his siblings. The five children wrangled over every decision -- should we bring Mom home? should we find a nursing home? who'll take what shift caring for her? -- and it seemed that every day required a new negotiation and a new building of consensus. Sometimes I explained the same point to three different siblings in the same day, each explanation taking many minutes. It was a month before she was ready to leave the hospital and, as it turned out, go home for a short while before her relatively sudden death. As I thought about the gift, it occurred to me that the real message was: "We're sorry."

The second gift came from the wild-eyed, suspicious daughter described in my earlier post, "Code Status." This one was a necktie with a famous designer's label. The daughter told me, "I'm a deeply spiritual person, and I sense you are, too. I've had this tie for many years, just waiting for the right person to give it to. Now I have faith that you are that person." Being put on a pedestal always gives me vertigo. I thought perhaps this gift might mean "We have ultimate faith in you" or, worse yet, "You can do no wrong." I wondered out loud if I was permitted to accept such an expensive gift. (I am salaried by my hospital system.) The daughter replied, "Don't worry about it. I bought it in China, and it's a counterfeit." We'd just concluded working out an elaborate care plan for her mother that would include hospice enrollment a couple of days later. Naturally, the plan completely unraveled over the weekend when I was off call. So perhaps the message of this gift was: "Gotcha."

The last gift came from the daughter of an elderly woman I'll call Molly and who will be described in a forthcoming post called "Hugs and Kisses." As Molly finally lay dying peacefully and free of pain, consistent with her expressed desires but achieved only after a long struggle with her inner demons and with the system, her daughter asked me to choose an item from a collection of photographs she'd done. They were all beautiful nature scenes taken in the western United States. My selection was a sunset, the light shimmering on the ocean and framed by the dark silhouette of an evergreen tree. It seemed appropriate for the moment. We said our good-byes, and once again I learned that sometimes a gift means simply: "Thank you."

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*The clash between medical and lay cultures is expertly described in Hippocrates' Shadow: Secrets from the House of Medicine, by David H. Newman, M.D. This remarkable book should be required reading for every health professional, and for every person who's ever consulted a health professional.