More Reflections On Hospice Delayed

Reading the comments on the post about how hospice could have started earlier than it did for Uzma and why that was important, I find myself thinking more about our experience.

Why Patients Don’t Bring It Up

The first question that pops in my head is, how come both of us — Uzma and I —  being physicians, we didn’t think of hospice earlier? Why should it only be the oncologists’ responsibility? We were physicians. We have many physician friends, even friends who are oncologists. Uzma had acceptance of her mortality. She had pushed through to get a palliative care physician. Yet, we didn’t see it then, as I see it today. There are two reasons why bringing up hospice has to be the oncologists’ responsibility.

First, even the most unflinching-from-death patient has ambivalence about it. There are many unfinished projects. For Uzma, our young kids were an unfinished project like no other that contributed to us being in two minds. At one point in September, she said mournfully, “I have become completely worthless. I am only a burden now. I should just die.” How does a caring husband respond to this? I said, “I couldn’t disagree more. Your mere presence in this home is a blessing for the kids. See how the first thing they wanna do every day when they return from school is to sit with you?”

I look back at that interaction and realize how it could create pressure for a patient to keep going on. But I don’t think any family, while caught up in the struggle of terminal cancer, can avoid responding in some version of what I said. No family member is going to say at that moment, “You are right, you are just a burden. Let’s talk hospice!” The struggle between acceptance and denial played out in our minds every single waking moment of our lives since Uzma’s stage 4 diagnosis. Sometimes even our dreams were taken over by that struggle. It’s also not the responsibility of friends — even the friends who are oncologists — to bring up hospice in that circumstance. They were our friends, not our doctors. Their primary role is to support us, not to lay out treatment and end-of-treatment options.

The second reason has to do with the difference between what oncologists know and what patients and families don’t know. Based on my experience in my specialty, I suspect that seasoned oncologists know when a stage 4 cancer patient’s illness and treatment has reached a phase where the odds of recovery/remission with the next best option are too low. Patients and their families don’t have the same information. The oncologists also know — or should know — everything that hospice means.  I am a physician, and I knew hospice as comfort care, not a death sentence. However, until Uzma began hospice, I didn’t realize how much comfort hospice provides, how much life-draining activities it helps avoid. See The Hospice Way To A Good Death for a description.

A hospice nurse commenting on the blog post about hospice delayed says something that captures this:

…I see and hear this every day with my patients I care for in a hospice. And I hear repeatedly “If we would have only known the care we would receive and the focus on living out whatever time we have left with comfort and quality of life, we would have chosen hospice much sooner”

Oncologists Don’t Delay Hospice Purposely

Another comment, this one on a Facebook wall where  Price Of A Bad Metaphor was shared says:

…I worked with hospice for almost 20 years and clearly, most hospice patients come too late to reap the rewards of the care. Please tell me you don’t believe it’s because oncologists are making money on the suffering patients.

Actually no, I don’t believe that oncologists delay hospice purposely to make more money. It is true. Money can create unseen incentives. However, given the known shortage of oncologists, they don’t have to worry about growing their business. They are incredibly caring people. You couldn’t pay most of us enough money to take care of as many terminally ill patients as they do. Uzma’s oncologist was brilliant, kind, compassionate, with great bedside manner and Uzma and I hadn’t the slightest doubt about his expertise regarding treatment choices.

It’s not the profit motive, but the culture of modern America and modern American medicine that is to blame. We have become too enthralled by the technological aspects of modern medicine. Yes, modern medicine is doing amazing things every day. Read about Gleevec® and Sovaldi®, and you will see what I mean. Every truly revolutionary treatment creates hope the next new medication could be them — the next revolution. Most new treatments, whether for cancer or for any other condition, just aren’t revolutionary. They may prolong life by a few months, but that’s it. And, all of them come with serious side-effects.

Though vaccine-refusal and the opioid epidemic might yet change this, the dramatic decreases in mortality over the past 100 years means that all of us — and oncologists are also us — have become uncomfortable talking about death. Oh, we can speak of death in the abstract, alright. But we don’t know how to talk about it with people who are dying and who we care for in some way. We all need to get better at this, but oncologists, who treat so many dying patients, have a particular responsibility to get better at this.

Oncologists Are Not The Only Ones With The Bad Metaphors

Oncologists’ use of the chronic disease metaphor in terminal cancer sucks. As another individual wrote in a comment:

…My Oncologist repeatedly uses this comparison for my Multiple Myeloma diagnosis. Looking at the data avg survival is five years, and I am only 37. I think this is very confusing for my family as it makes them feel that this diagnosis has not significantly shortened my life.”

How terrible for this commenter. Oncologists need to stop using this metaphor.

However, as another commenter pointed out, they are not the only ones using a bad metaphor:

Also the battle metaphor. Not only because it seems to indicate that some didn’t fight hard enough, but also because that fight overshadows the good that can come with focusing energy on the things important to you.

And the people most responsible for the battle metaphor patients, families and advocates. Every battle has a winner and a loser. Stage 4 cancer, by its very definition, has a 100% probability of a foreshortened life. Nobody wants to be a loser. So, to the extent that one keeps buying into this metaphor, the death conversation is not likely to come up.


Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 181 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.

 

Hospice Delayed Is The Price Of A Bad Cancer Metaphor

Loss and grief inevitably make one look back, as if in the rear-view mirror of a car and wonder, “Is there something that could have been different?” Some of those backward glances are just about wishful thinking. Others are meaningful with lessons for all involved. Thinking about what Uzma would have wanted her readers to learn from her experience leads me to write this. I write not from a place of anger, but from a place of hope, where my sorrow can benefit someone else. I hope this reaches all oncologists.

Uzma The Fearless

It is December 2018. Both of us know what’s coming. But gloom descends on Uzma and me when she is referred to hospice. I call my parents to inform them. They are crying. My father recounts a conversation from the summer of 2016 when he and my mom were visiting us. He says, “It was just Uzma and me, sitting at your kitchen table.” I imagine the scene. I am upstairs, working from home. The two of them are sitting at the round table in one corner of the kitchen. The afternoon sun is filling our kitchen with natural light. Uzma and my dad are drinking masala tea.

She tells him, “I don’t know what you know about my illness, but my prognosis is not very good.” He tries to say to her not to talk ill about herself. And she interrupts him politely, “No, I am realistic. My cancer became stage 4 in February 2016. Looking at the data available about what I have, I am not likely to make it past February 2019. Any day after that month will be a bonus.”

Uzma expected honesty from everyone and almost brutal honesty from herself. Her social media posts are a testament to this. In March 2017, she wrote a very brief post on Facebook.
I am not sure whose quote it is, or whether she modified another quote to make it her own. But that is who she was. Like Dumbledore, always insisting that we must name what we fear most. Later in 2017, more than a year after that conversation with my father, in December 2017, she writes a post Prognosis: Three Years Average, that shows that 2019 is still very much on her mind. She talks in that article about being feeling ill-prepared, tired and yet hopeful. But always realistic. I always said she was an astute and skilled physician. She didn’t make it past January 2019.

Things Start Falling Apart

As I look back upon the final months of Uzma’s life, I think that despite her unflinching realism about her prognosis, she paid a heavy price for the tendency among oncologists to reassure stage 4 cancer patients by comparing it to a chronic disease. In medicine, the term “chronic disease,” usually means a condition such as diabetes, high blood pressure, and high cholesterol, conditions that are managed or controlled but not cured. It is ludicrous to compare stage 4 cancer to chronic disease. Half of the women with stage 4 breast cancer die within three years of diagnosis. Only one fifth make it past five years. I believe that using this inappropriate metaphor makes oncologists convey a false sense of hope and delays conversation about hospice.

Between February 2016 and June 2018, Uzma tried multiple medication regimens for her cancer, none except the first one working to keep the disease from progressing for more than 3-4 months. She knew where this was going. By late 2017 she had started seeing a palliative care physician of her own accord. By May 2018, her body starts to show the signs of breaking down under the onslaught of cancer and chemotherapy. Cancer is like a rebel army — it hides in this organ or that. Chemotherapy is like cannon-fire. Whether ultimately successful or not, it destroys a lot more than just cancer. The coveted status of NED or NE(A)D — No Evidence of Disease, or No Evidence of Active Disease — forever eludes Uzma.

Uzma develops significant neuropathy — her nerves are damaged. It causes tingling, numbness, and pain in the tips of her toes and fingers. The insensitivity of her fingers makes it impossible to continue making jewelry, something she enjoys doing with our daughter. Eventually, pencils, brushes and other art tools start slipping out of her hands, and she gives up all art. Her handwriting suffers. Abilities that bring her so much joy are suddenly no more.

In June 2018 she starts having falls. In July, while I am out of town, she falls in the early hours of the morning. She can’t get up by herself. She lies on the floor for a couple of hours until our son wakes up. He helps her get up. It is no longer just neuropathy, and she is also becoming weak. One more medication regimen has failed. She is given a break to help recover a bit from the neuropathy and the weakness before starting the next regimen.

Around that same time, we hear of an immunotherapy trial at the National Cancer Institute, which had worked for a woman with breast cancer in the liver and the rest of her body. She was given three months to live. With immunotherapy, she became NED.

We reach out to the doctor running the research study of that immunotherapy. We send him all the requested records and wait with bated breath for his decision. He calls back and says, “You do not qualify for this trial. The burden of cancer in your liver is so much that you could not tolerate this experimental treatment. If you were my wife, I would not put you in this trial.” We were disappointed. Uzma’s oncologist knows about this.

What Could Have Been

Hindsight is 20/20, but I believe that her otherwise brilliant, kind and compassionate oncologist failed her at this moment. And I think that using the stage 4 cancer to the chronic disease metaphor is what caused this failure. It is in July that conversation about hospice should have begun. I don’t think Uzma would have agreed to it then. But by August, her next chemotherapy regimen had caused her significant anemia requiring her to have three blood transfusions. That treatment too was stopped.

During her second blood transfusion, Uzma wearily says to me, “I think my body is finally giving out. I want to stop treatment. I am tired of living like this. We spend so much time coming to the clinic to get treatment. Then we coming again for treatment to deal with the side-effects of treatment.” She looks exhausted. I reply in the only way I know, “I know you feel that you have to keep going for my sake, for our kids’ sake. But I don’t want you to suffer anymore. You know your body best. If you decide to stop treatment, I just want to say, you don’t need to keep suffering to prove that you love us.”

Had the oncologist begun the hospice conversation in July, he might have said now, “I am sure you are frustrated that we have to give up on treatments far too quickly due to their side-effects. We had briefly discussed hospice in July. Have you given it more thought?”

In September her scans show a continued progression of her disease. She needs a cane to steady herself while walking. Stairs become a challenge. By October Uzma needed a walker. By November, we were regularly using a wheelchair to move about the hospital. Uzma, the unflinching realist, would most likely have chosen hospice in any of those 3 months if the discussion about hospice would have begun back them.

When hospice ultimately began, it was an immense boon. Had it commenced in July, Uzma would have avoided about 30 trips to downtown Chicago, each involving about 2 hours of roundtrip commute and about 6 hours spent at the hospital. She would have had two fewer CT scans, one less MRI and one less bone scan. She would have avoided about 25-30 needle pokes and three blood transfusions.

Had she turned to hospice in September, she would still have avoided 2-3 months of futile treatment and the hardships it was to bring without benefit. Some of those needle pokes, chemotherapy sessions, blood transfusions, and long commutes would have been avoided. She would have had avoided a lot of the fatigue that comes with such treatment. With the time and energy saved she might even have finished the portrait sketches of her kids that she wanted to complete. Maybe she would have finished writing the little notebooks for each of them in which she had begun writing personal messages for them. She might have done a book signing or two, or just taken more selfies!

Undoubtedly, experienced oncologists like Uzma’s know when a patient’s disease has entered a terminal phase. I believe the conversation about hospice needs to begin long before it enters that phase. Uzma’s oncologist had only one earnest conversation about hospice with Uzma — the day the decision was made to end active treatment. At that moment, Uzma’s liver could no longer bear the burden of cancer and its treatment. I believe it is the cruel use of the metaphor of chronic disease and the false hope that it creates for the treating physician that led to this outcome.

If oncologists can’t bring up hospice early enough even for fearless patients like Uzma, they have only themselves to blame if patients equate palliative care with a death sentence.

I am not saying that oncologists should not try to reassure patients and families. But they need greater awareness of the price paid by patients and families for using the chronic disease metaphor for stage 4 breast cancer. This metaphor probably lulls the patient and family into thinking the body can handle more than it can and delays the conversation about hospice. I hope that one day, the state of treatment for  Stage 4 breast cancer will be like diabetes, or even HIV, a once-dreaded infection; today over 80% of 20 year-olds diagnosed with HIV can expect to live past 44 years with treatment. But that day is not here yet for Stage 4 breast cancer. We should stop pretending otherwise.

Using The Metaphor Correctly

Dale Carnegie once said, “Any fool can criticize, condemn and complain – and most fools do.” So what would I have oncologists do? I think it is reasonable to say to the newly diagnosed Stage 4 breast cancer patient that, “We have many treatment options available for stage 4 breast cancer these days. We will begin with the treatment that is most likely to be effective while minimizing side-effects and gradually move towards treatments that have increasingly bothersome side-effects. We have no way of knowing ahead of time which treatment will work to stop your cancer from growing. But once it does stop growing, or goes into remission, our goal then would be to treat your cancer as a chronic disease like diabetes, to be controlled and managed indefinitely.” That’s the only proper way to use the chronic disease metaphor in stage 4 cancer — as a faint hope, not a current reality.

If the patient were to ask, “What if it never stops growing? What if it never goes into remission?”

The honest oncologist would respond, “That is still the more likely outcome, but if that were the course of your illness, we would want to balance the quality of life with its quantity. If remission were not your fate, what would be your biggest concerns about what you want to accomplish in the time you would have?”

It would be the start of an ongoing conversation about hospice and the patient’s values and desires.


Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About three months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 180 reviews, all 5-star, on Amazon. Her husband, Dheeraj Raina, MD, now maintains this blog.

The Hospice Way To A Good Death

My wife Uzma died peacefully at home. She didn’t take any painkillers for her last 3 days. Our kids, my parents and I were next to her. In the weeks leading up to her death, many old friends visited her. Others sent her flowers, cards, and food. It was a good death. Yes, in the last 5 years cancer and its treatment took a physical and emotional toll. Yes, she left us a lot earlier than she deserved to go. Yes, the kids are young.
Nevertheless, it was a good death. There are few among us who wouldn’t want her end — pain-free, at home, with loved ones near. None of it would have been possible without hospice.

When Uzma was referred to hospice, as physicians both of us knew what hospice meant — that now the focus would be on comfort care. But I didn’t quite get then was the incredible, warm, enveloping embrace it provides to the dying and their family. A referral to hospice is not a death sentence. The death sentence was the spread of cancer to the liver. As Uzma wrote previously on her blog, the prognosis of metastatic breast cancer is 3 years average. Hospice merely ensured a comfortable, dignified dying process.

Every single hospice appointment was at home. The nurses came 2-3 times a week. The doctor came every couple of weeks. The physical therapist, the social worker, and the chaplain, all came home. They met with Uzma in whichever room she was at the time. Though they had their professional tasks to complete, they met with Uzma for only as long as she wanted to.

But for going to the hospital for paracentesis — the procedure of draining the fluid that accumulates in one’s belly when the liver gives out — Uzma didn’t leave home at all while in hospice. Upon the recommendation of hospice, the second time they did the paracentesis, they put in a catheter, a tube, in her belly through which we could drain the fluid at home. The hospice nurses showed me how to remove the fluid once a day, if necessary, to keep Uzma comfortable by keeping her belly from distending.

There were no unnecessary interventions. No lab tests whose results wouldn’t change treatment. No medications that wouldn’t provide comfort. One of the first things we received from hospice was a comfort medication kit to use to alleviate symptoms that can accompany dying. They included drugs to help with agitation, anxiety, pain and respiratory secretions. No running to the pharmacy for medications either; they were all delivered home. The physical therapist said his goal was to ensure safety and comfort. He taught me how to help my wife get out in and out of bed, use the bathroom, sit around and move about in a manner that was safe and mechanically efficient, i.e., less tiring for her. As I said, no unnecessary interventions.

Had Uzma needed hospitalization for any reason — say, a condition unrelated to cancer that she would survive with treatment in the hospital — she would have bypassed the Emergency Room and would have been admitted to a bed reserved for hospice patients. Had I needed a respite from caregiving, for a few hours, hospice could provide volunteers to provide that for up to three hours at a time. Were I to need a more extended respite, Uzma could be admitted to a hospice bed at a nursing home for up to five days. And the hospice staff would coordinate and arrange everything. We never had to use these options, but just knowing they were there gave comfort and peace of mind.

Two of the most emotionally essential services that hospice provided was a chaplain and a social worker specializing in counseling children about death and dying. The visits with the chaplain were among the longest Uzma had with any of the hospice professionals. The social worker provided some excellent tips about helping kids. Both the chaplain and the social worker offered incredible emotional support to Uzma and us. The social worker, who specializes in counseling kids, is also available to provide bereavement counseling for several months after Uzma’s death.

Then there’s the equipment that hospice provides. We already had a cane, a walker and a wheelchair. But if we didn’t have those, hospice would have provided one or all of those. Eventually, hospice provided a commode so Uzma could relieve her by her bedside. But the most important and most used thing that hospice provided was a hospital bed.

Uzma had decided long ago that when the time came for the hospital bed, it would go next to a large window in the living room that faces the front of the house. From our bedroom window, one can only see the back of other homes in our neighborhood and the alleys separating them. In the front, there are trees. She could see people as they parked their cars and walked up to the house to visit her. Most importantly, she could see our daughter’s bus stop. She could watch her board and exit her bus from the hospital bed. That’s the main reason she had chosen that location for the hospital bed long before the bed came. The second most important reason was that she did not want to die in a bedroom, where people go to sleep. She wanted to die in the living room, where people live and meet.

Hospice was available 24/7 to consult about any difficulties Uzma was having. Those phone calls were always reassuring. When she died on the coldest night on record in Chicagoland, the hospice nurse came within an hour to examine and pronounce her dead. He also called the funeral home to notify them of the death. He gave us a heads up about our next steps that night with the funeral home.

Hospice didn’t stop suffering. But what it did for us was priceless. Without hospice, Uzma would not have died in a manner of her choosing at home, without pain in her last few days and surrounded by family. She would not have died where she wanted to die — in the living room.


[If you liked this post, you might also like its companion post How A Doctor Chose Her Last Doctor. Uzma Yunus, MD, the creator of this blog died on Jan 30, 2019. About 3 months before her death, she published her book Left Boob Gone Rogue: My Life With Breast Cancer, which as of this writing has 178 reviews, all 5-star, on Amazon. This blog is now maintained by the author of this article, Dheeraj Raina.]