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.

Code Status

When I'm called in as a palliative medicine consultant, often the care team asks me to "clarify the patient's code status" or "get the DNR." Our default posture in medicine is that everyone gets CPR, defibrillation, cardiac drugs -- to steal a phrase from Zorba the Greek, "the full catastrophe" -- unless they specifically declare otherwise. CPR is an example of how medical ideas and technologies often sprint ahead of the evidence for their effectiveness. From a technique developed in operating rooms 50 years ago to restart hearts in otherwise healthy people, resuscitation has become enshrined in contexts for which it was never intended. Yet despite tweaking of the particulars over the years -- so many compressions to so many breaths, to pummel or not to pummel the breastbone with a closed fist -- survival after CPR is dismal, especially in the patients with life-limiting illnesses whom I see every working day.

Code status also is tied up in the admirable move away from paternalism in health care toward respect for patient autonomy. We doctors don't decide for you. You get to choose -- and that's a good thing. But the law of unintended consequences still applies and produces, well, unintended consequences. Now patients and their families are presented with menus -- do you want chest compressions? how about intubation? pressor medications to support the blood pressure? -- when they can't really understand the context of their choices.

Along with our profession's reluctance to dispense bad news (which I've commented on in previous posts), these two trends -- the kudzu-like proliferation of untested technology and the abdication of professional responsibility behind the smokescreen of autonomy -- combine in a perfect storm for patients and families facing life-limiting illness. Recently I consulted on a woman with widespread cancer who'd already chosen to enroll in hospice as soon as she was discharged from the hospital. But she had an episode of very low blood pressure, and the hospital's "rapid response team" rolled in with therapeutic guns blazing. As requested, I talked to the family about their mother's code status. They had a surprisingly nuanced view. They didn't want all the nasty, invasive stuff, but they did want us to make a reasonable effort to give them more time with their mom. When I reported this position outside the room, the nursing supervisor asked, "What about pressors?" The menu mentality was firmly ensconced. I pointed out that the family hadn't sliced and diced their reality that way, and that I felt they were relying on us to define what was reasonable. In reply I got some eye-rolling and a brief soliloquy on why that wasn't an acceptable response. Ultimately I picked up the challenge and said that "reasonable" meant "things that didn't require moving the patient to the ICU." That seemed to satisfy all parties. The patient's blood pressure stayed up, she went home on hospice the next day, and about twelve hours after discharge she died at home.

Another example, this time with an elderly patient whose every organ system was failing. The daughter -- wild-eyed, suspicious, and veering between anger and despair -- had already been offered the menu of choices instead of an honest appraisal of her mother's situation and her chances. She'd chosen a ventilator but none of the other stuff. No one had told her honestly that her mom's chance of getting off a ventilator once placed on it were somewhere between slim and none. How would things actually play out, I found myself wondering during my two-hour meeting with the daughter, if her mother actually did have a cardiac arrest? What would happen to the menu of choices? Would the rapid response team limit itself to intubation and a ventilator, or would the temptation to use other methods creep in? How did we get to this place, anyway?

As a hospice and palliative medicine physician, I can't do much about the unrelenting spread of medical technology in the absence of good evidence that it's effective. But I can try to do something about the menu problem. I'm tempted to try this approach: "If your heart stops and you die, do you want us to try to bring you back to life?" Blunt, perhaps, but closer to the truth than "Do you want pressors?"

Reframing

The battle was on. Weeks out from major surgery from which she'd never fully recovered, the elderly mother was in bed, moaning in pain and telling anyone who'd care to listen that all she wanted was to die. Her daughters fought with her openly, telling her she was a fighter and that she'd always bounced back before. They instructed the nurses not to give their mother pain medicine because it made her too "doped up" to battle for a cure. The nurses gnashed their teeth as, powerlessly, they watched their patient suffer. The mother said she didn't want another surgery to place a feeding tube, but the daughters insisted. Eventually the mother signed the consent, but her doctor said he wasn't sure she truly understood what she'd signed. The daughters fired the doctor and recruited a new one. That physician persuaded the daughters to let him start pain medication, but the mother continued to moan and lapsed in and out of consciousness, sometimes making sense and sometimes speaking gibberish. Eventually someone said, "Let's call palliative care."

Parachuting into a battleground like this is something every palliative care physician experiences -- sometimes more than once a day. When I arrived on a Friday afternoon -- and it's always a Friday afternoon, or so it seems -- I saw an elderly woman restless in bed with a furrowed brow and rapid breathing. It was obvious that she was in pain. There was no feeding tube, but she was getting a souped-up IV that provided calories, amino acids, and vitamins. I could engage her in conversation only sporadically. When she seemed most lucid, she said she was done with treatment and wanted only to be left alone. When I asked if she wanted to die, she closed her eyes and nodded.

One of her daughters -- I'll call her Lila -- was in the room with me, and when my examination was over I took Lila to the family lounge. We reviewed everything that had happened since the surgery. She did seem to accept that her mother was gravely ill, but she was unsure about the dying part. She felt that a terminal prognosis would mean her mother would stop receiving care and basically just be left alone to die. And she had an issue with the staff accepting her mother's word for it. "Look," she said, "if a person has a bad stomach ache, he might say 'I want to die, I want to die,' but it's because of the pain. He doesn't really want to die."

As I listened to Lila's comment, I felt she had a legitimate point. How many of us have said the word die in just the way she described? But I also sensed an opening, a way to reframe the discussion. "You may be right," I replied. "Perhaps when your mother says, 'I want to die,' she's really saying, 'I want you to relieve my pain and suffering above all, and beyond that I'll let things unfold on their own.'" I said that we could actually do that -- treat her pain without making her unconscious, and support both daughters and their mother no matter what happened. I didn't talk about dying. I talked about living without suffering for however long she would live.

We came to an agreement, and with that my biomedical/drug-prescribing/doctor side kicked in. I changed the pain medicine to a more effective one at a lower dose. I diagnosed delirium -- by definition, fluctuating level of consciousness -- and prescribed a medicine to help clear the mother's disordered cognition. I left the IV alone, figuring that one had to choose one's fights. I altered some other parts of the care plan to minimize pain.

Lila and her sister, taking shifts, remained at their mother's bedside for another two and a half days until she died. By Saturday morning, the mother was unarousable and the daughters said they understood it was time to say good-bye. Throughout the vigil they told the staff they believed their mother was no longer suffering. 

"All we are saying," the Beatles sang almost 40 years ago, "is give peace a chance." The prerequisite for peace -- between nations, between people, and even between the warring parts of oneself -- often is a subtle reframing, a tiny change in perception that illuminates a different way of thinking about the conflict. And it's true for peace in dying, too.

Abandonment

Here's another interesting -- well, disturbingly interesting -- study from the Archives of Internal Medicine. Researchers were talking with patients about hope and their views of the future, but the patients kept bringing up their fear of being abandoned by their doctors. They worried about the loss of their physician's medical knowledge and about the loss of the physician-patient relationship. Family members said the same thing. One offered this quote: "...they're [that is, the hospice team] just here to make you comfortable until you die. But you can't seek your regular treatment from your doctor. Your doctor is out of it."

Physicians, too, worried about feelings of abandonment that their patients might experience. They seemed to understand that continuing treatment, for patients and families, signaled a willingness to keep the relationship going; presumably, a decision not to press on with therapy was a sign, to patients, that their doctor was giving up on them. As a hospice and palliative medicine doctor, I've often wondered why my fellow physicians so often continue treatment even though they know -- and I know they know, because I've asked them -- it has a slim to none chance of helping. Maybe it's not about the treatment. Maybe it's about the relationship.

I'm so troubled by these findings. My hospice team works hard to keep the patient's doctor involved. But many physicians tell the nurses not to bother them, and they expect the hospice team to take over the case once the patient is referred. Others are furious if they're not kept up to date on everything. From the physician side, at least, it seems that the abandonment issue works itself out in many different ways.

Keeping silent when we ought to be explicit...this is a real problem with patients getting honest, direct information, and it has an effect on the question of abandonment, too. Just when they need most to know that they're not alone, patients and families perceive that they are losing care and caring. Can't we just talk?

The Power of Truth

Over and over in this work I'm reminded of how hard it is for patients and families to get the one thing they crave -- the plain, unvarnished truth of their situation as they face serious, life-limiting illness. Bad news seems to chase honesty from the hospital room. Just when people need hard information the most, they can't seem to get anyone to give it to them. And not knowing the truth can prevent them from achieving their final wishes.

A recent example: I saw Ivan at home one September afternoon. He was dying from far-advanced cancer, and it was clear to me that he had only days to weeks to live. He was in and out of consciousness. He'd emigrated from eastern Europe, the family told me, and he hadn't seen his two brothers in over 30 years. His dying wish was to see them one more time. They were planning to come at Christmas, coming to say good-bye. 

Ivan's wife and children were stunned when I reviewed with them my assessment that time was way too short to allow for a visit three months in the future. They recovered, though, and began talking with our hospice social worker. When I came back in a week, Ivan had deteriorated further, and even the most skeptical of the children could see what lay ahead. The social worker was amazing. It literally took phone calls to the U.S. Embassy in the patient's native land, but the brothers got expedited visas and arrived about ten days after I first met him. They had a good visit, I was told, and Ivan roused enough from time to time to recognize them. Two days after the brothers returned to Europe, Ivan was gone.

What would have happened if I'd sugar-coated the prognosis? If I'd done the easy thing and just nodded my head when they told me about the plans for the Christmas visit? (Apparently, that's just what their oncologist had done.) Ivan would have been denied the one thing that mattered most as he lay dying.

The truth was hard to hear, but it gave Ivan's family power.