The Ugly

Written by: HPMFellow

The good and the bad. I had seen both sides of death before considering a career in helping people live and die better. The love of a family that comes together to make their loved one’s passage a smooth journey. The unfortunate wedge of unresolved transgressions that can tear another family apart when emotions are running high. But the good and the opportunity to do good has always outshone the bad for me in this field as I like to think it has in life.

But sometimes I forget that even when everything is done right in a situation made to ease one’s passage surrounded by love and goodness, a natural death can still be ugly.  It’s the exception to the rule, but it doesn’t make picking up the pieces any easier.

He had just turned 39 years old. The week before he had been considering further chemotherapy for an aggressive neuroendocrine tumor that had just been discovered 6 months prior. He decided along with his oncologist that he first needed some time to recover his energy and optimize his symptoms before undergoing more aggressive therapy, and it was then that he had enrolled into our home palliative program. Within a day his wife had called his oncologist to discuss his rapid decline. They decided hospice may be the best option now.

I met this man four days ago after a weekend of accelerated physical decline. As I entered his modest apartment with my attending the first thing I noticed was his gaunt 39-year old body shifting back and forth uncomfortably from a sitting position to lying down on the mattress in his living room. The next thing I noticed was an open door down the hallway – decorated cheerfully in green and purple for what I assumed was a young girl.

“Turn it off, now,”  I thought to myself, tucking away any thoughts of my own daughter. “Turn that off, and turn on what he needs.”

I crouched down and had a conversation with the man and his family. He was experiencing terminal agitation, and had increasing pain. We gave him some more Ativan, some more morphine, and some ice chips to wet his lips. He was lucid despite it all. Joked, “I’ve seen better days” in response to the worn, “how are you feeling?” I knew I had to be careful with my words – not just because these would likely be his last hours, but also because I knew his wife would probably replay the day in her mind for weeks, and maybe even years to come.

I glanced at the man’s bright pink POLST form  – “full code,” selected across the top, signed just three days prior. I waited until his breathing became a little more regular, and he paused to open his eyes again. At a loss for words I tried the truth. “I want to ask you an important question. I understand it was your hope to become stronger to get more chemotherapy, but unfortunately your body has become too weak.“

“Is this the end?”

His wife turned her head in an attempt to hide her tears.

“It’s the beginning of the end, yes. You’re dying. You have told nurses and doctors before that should your heart stop beating, and you die that you’d like us to try to bring you back to life even if that means there’s no guarantee that it would work, and understanding that we might hurt you. Your body has changed so quickly, and I know it’s impossible to think about, but it’s more vital now than ever. I must ask – is this still what you want?”

He closed his eyes again, “Yes. Do it.” This time his wife didn’t hide her face. She asked, “Honey. Are you sure you want to die like that? In the hospital? Away from me?”

He closed his eyes again. Then slowly, “No. I don’t want that. Just let me go. Just make me comfortable.”

His wife nodded and sobbed again.

“What – besides comfort – is the most important thing to you right now?” I attempted.

“Just my family. And my friends.”

I excused myself to the next room over to give them some time together. I heard her call a couple of close friends. His parents were on their way from Arizona. We spoke to his mother-in-law who had been there to support her daughter. She told us how she had lost her spouse as well. She relayed that her daughter had just quit nursing school to be with her son-in-law during his illness. She told us the man’s daughter – just three years old – was staying with her the past few days. “How do you tell a three-year-old her father has died?”

Before I could manage a humble response her shouts filled the silence – “Is this normal? Doctor!”

The ugly. He had turned on his side and vomited profuse amounts of old blood. The life was leaving his eyes. My attending comforted his wife, and I held him steady as he took several last agonal breaths.

“Is he gone? My love! I love you. I love you.”

He died. We offered to clean the body of the man. His mother-in-law provided towels while she continued to comfort her daughter. One of the towels I used to sop up the coffee-ground blood was a toddler’s hooded towel – pink and cat-shaped. I placed it in a trash bag with the rest of the soiled bedding. Part of me wanted to try to get the marks out of the child’s towel, knowing she’d ask for it later. But I thought if the stain couldn’t lift it would be painful for both daughter and widow. It was too late to erase this memory for her. But maybe I could eliminate some reminders.

After leaving his residence I didn’t cry – atypical for me. Just reflected for a long time before driving off in my car. The breeze felt softer when I rolled down my window.  The sun’s warmth retained on my driving wheel felt kind. I watched a kid walking with his father across the street – cheerful and seemingly untroubled. An almost cruel juxtaposition to the events I had just beheld in another’s life.

At the least – I hoped that not being alone at the end gave this man and his family some degree of comfort. And I reflected on how precious is life. And how beautiful. And how ugly. And good. And unfair. All at once.

Saying Goodbye

By: HPMFellow

Patient “turnover” is pretty high in hospice work. It comes with the territory of serving a patient panel with a limited prognosis. When a patient quickly comes and goes off our service and I’m made aware of their death, my usual response is either irrationally impractical (“but I was going to see them tomorrow!,”) or slightly sentimental (“I wish I had more time to know them better.”)

It’s not the way with every patient and family I’ve met – I’ve had some rewarding longitudinal experiences which have felt “complete” for lack of a better word. I get the opportunity to help and see a person become more physically and emotionally comfortable before their final departure, and I get to meet with them more than once. However, even during these more whole patient experiences I’ve only had the chance to say “good-bye” once.  A real good-bye.

I had heard rumors from my patient’s social worker and RN case manager that morning that he was planning to move back to Peru to live his final days. He and his family recognized he was approaching his final weeks of life. The disposition plan was to supply him with enough medications for last him through his last month of life.

As I wrote out my patient’s prescriptions I started reciting my standardized closing routine of the home visit out loud: “Please don’t hesitate your RN case manager if there’s any changes or questions, use our 24-hour triage line at any time of day -”

And then I stopped at the part where I schedule my next visit or throw in the well-intentioned but trite, “take care.” There would be no next visit. This was the closing send-off.

I hadn’t prepared any words – any closing statement that alluded to the future seemed awkward. I could see in his eyes that he knew what was coming next. I was suddenly overcome with emotion as I looked at my dying patient’s face and realized out loud, “this will be my last visit with you.” It was the last time I’d see him alive. “It was an honor to serve you.”

What came next was also unexpected – happy tears and hugs. But it made sense! Yes, mortality was just acknowledged out loud, but the next leg of the journey would be one of returning to a place this man knew as his home in this life.

The family asked me to join them for a group photo, and I did wind up telling them to “take care” of themselves and each other in the end.

I have the terrible habit of “chart stalking” patients in our EMR system long after my responsibilities to their care have ended. I discovered my patient died within two weeks of our final farewell.

I don’t know if I’ll ever again experience a parting as beautiful as that one – I’m happy that I get to remember my patient as an alert and talkative man with smiling eyes.  But I do take pause with every patient good-bye now. It may not be the last, but I realize it still has the ability to be meaningful if I just recognize the potential.

Palliative Care in Extended Care Facilities

Post by: PalliNP

When a loved one is in an extended care facility, Medicare rules will allow for 100 skilled care days. But what if that patient needs hospice care? Medicare will not pay for both hospice care and skilled nursing home care because they are both billed under part A. That leaves families with a large bill for room and board. Many cannot afford this, and so they forego hospice care in order to maximize their Medicare payments. If a patient has Medicaid coverage, they actually might be better off. Medicaid will pay for room and board and Medicare will pay for hospice.

Many extended care facilities are stepping into the gap with “palliative care”. What exactly is this care?

An interview with several staffers at ECFs that offer long term “palliative care” reveals that it is not what we have come to understand as palliative care. Comments such as “we can give morphine” and ‘we can give 24 hour care” show that much education is needed. The patient may get pain and symptom management and no one questions that a caring staff will try to provide that extra TLC. In an already overburdened system, the extra eyes ears and hands of hospice professionals would be welcomed. None of the staff, including the medical director, will likely have advanced palliative or hospice training and expertise. The patients and families in these programs do not get the hospice team or psychosocial support that hospice provides. But they are providing a service that is much needed, however incomplete.

What is needed is a major change in Medicare rules about extended care and hospice coverage. But until then, palliative care services are stepping up to support patients and families by bringing teams into facilities. Palliative care, unlike hospice, can be delivered alongside ECF care and will be paid for by Medicare under part B. In addition to advising and offering recommendations about care, the palliative team can model how to have difficult conversations, ways to explain the dying process and progression of disease, and offer staff education opportunities.

Dispelling the Myths About Palliative Care

Dispelling the Myths About Palliative Care

In a great post by Helen McNeal, Executive Director of the California State University Institute for Palliative Care at CSUSM, she dispells 6 major myths about Palliative Care. In my experience, there continues to be significant confusion between hospice and palliative care and what is the relationship between them. I believe understanding the differences and reviewing the myths bout Palliative Care are instrumental to allow increased access to this very important care model. Please share this with as many of your contacts as possible whether you are a lay person or health care provider.

She begins the article by stating, “Almost everywhere you turn today in the media, there is some reference to palliative care.  Therefore, it is surprising how much confusion exists within health care in general but particularly amongst physicians about what it is, why it’s important, when to refer, etc.  And, generally, I see much more of an ostrich-like posture about the response to this confusion on the part of many health care providers than one would expect.  Given our aging population and data that demonstrates that palliative care increases longevity, reduces readmissions and improves outcomes, if this were a drug, everyone would be prescribing it.  Instead, for many patients and families, getting a referral seems like hand-to-hand combat.  For palliative care teams, education and building a referral base is a strategic, needlessly time-consuming one-on-one relationship building process.  Isn’t it time we all got on the same page?”

Helen McNeal goes on to discuss the following 6 myths:

  1. Palliative care equals hospice.
  2. Palliative care is only in hospitals and hospice is at home.
  3. A referral to palliative care means giving up active treatment
  4. Palliative care is only about pain and physical symptoms.
  5. Asking for a palliative care consult means giving up caring for the patient.
  6. Isn’t palliative care just good medical care?”

Rapport Report

By: HPMFellow

Few things feel better than making a genuine connection with another human being.

In the palliative world you have the opportunity to do this quite frequently. I don’t forget that I’m in that place of privilege. But every so often the rapport you establish with a patient or their loved one can backfire when someone is experiencing grief in an unhealthy manner.  It’s times like these that having a handle on good self-care and setting emotional boundaries may provide relief from burn-out.

A recent encounter I experienced with one of my home palliative patient’s daughters has left me in a reflective state about the risks and benefits of establishing good rapport. When I met this patient and her family it was clear to me from the onset that my patient had reached a comfortable place of acceptance with her advanced disease, and that most of my palliative energy during home visits would be expended on helping guide the primary caregiver through this challenging journey with her mother.

I must admit – there were certain identifiable characteristics of this woman who I believe allowed me to particularly amplify empathy to her. She was a woman who obviously cared deeply for her mother, a woman who was self-sacrificing, and a woman who was openly self-deprecating in her neurotic tendencies. This woman reminded me of my own mother. My mom was the primary caregiver for her dying grandmother several years ago and I witnessed first-hand how her deep engrossment in my grandmother’s care affected her relationships with siblings, her family life, and at last her own health.

The day I met this daughter I recognized that she had already felt these pangs – “I just got into a fight with my brother – I know I shouldn’t have done that in front of Mom,” “I’m running late to pick up my kid from the dentist,” “Oh, that must be the plumber at the front door.”  After meeting with her and the patient together, I asked how she was taking care of herself. “Not at all” was her honest reply. I said something to the effect of minding her self-care, and she genuinely expressed gratitude for this recognition. I walked away from the house feeling like I had just had ended a Friday with a “good encounter.”

I guess I forgot to recall that people with anxious propensities can ride a tumultuous course of feelings. It should not have come as a surprise then that I may be the target of her next emotional tide when I called to check in the next week. A seemingly benign, “How are you doing?” was returned with the following exchange:

“Not good. Yunno, doctor – those medications you stopped last week, I should have never stopped them. I shouldn’t have listened to you. I took my mom to see the cardiologist today, and he’s livid. My mom’s blood pressure is up, and she might have a blood clot in her arm!”

“A blot clot? I don’t believe we stopped any blood thinners. I’m sorry to he-“

“No, it’s more than I’m sorry. I have to go!”

Crushingly perplexed, and a bit wounded I quickly reviewed my patient’s electronic chart. After all – I’m still a physician learner – maybe I had a horrible mistake. The chart confirmed that I had discontinued an antidepressant the patient felt wasn’t helping her, a bisphosphonate, and a statin. Though this patient had a life expectancy of less than 6 months and wouldn’t immediately benefit from these medications, I had checked with an attending and the now alleged livid cardiologist prior to stopping them.  I left a message with this specialist who denied being upset. The patient didn’t have a blood clot. Knowing that what I had done medically hadn’t caused the patient or her family any physical harm I next reviewed in my head what I might have said differently to provide anticipatory relief from panic. You might imagine that exercise was futile.

That day I spent some extra time re-centering my focus before getting in the car to my next destination. I couldn’t immediately pinpoint what had jolted me so, but I’m happy to say I was self-aware enough not to trust myself behind a wheel without a time-out and a latte.

What I have taken away from this experience is not that I shouldn’t allow these human connections to occur (it’s one of the hugest perks of the field,) but to not let them influence my expectations of human behavior.  It’s surprisingly easy for me to forget that the emotions and actions of those I encounter are unbridled and subject to rapid transformation, particularly when it comes to topics of life and death, particularly in the home setting. I think one of the biggest adjustments in transitioning from a family doctor in a clinic setting to a palliativist in the field is not the expectation that my patients won’t experience transformation, but I won’t observe it happen over a course of many years. The concentrated dose of emotions is as frustrating as it is rewarding.

My next telephone exchange with the daughter also happened to be during a moment of crisis, but her tone had changed to one of calm and gratitude. I didn’t let the prior exchange sour my satisfaction of being of service, but I also suspect that she’ll not always be so composed in the future. And it will probably have nothing to do with my medical skill or rapport, but because she is human and try as we may, we can’t prevent or anticipate all sorrow.

As I continue to reflect on my professional relationship with this daughter, I recall some advice from a mentor I once had thought was callous – to paraphrase, he told me that at the end of day the patient’s problem/illness is their own, not yours. I’ve come to realize that the wisdom of these words does not come in cautioning against connecting with other humans, but in recognizing that you enter and leave their lives for only a brief second, and that your opportunity to connect is meant to provide guidance, not ownership of their feelings or actions.

New Blog Contributor

I’m happy to introduce our second guest blogger. HPMFellow is a fellow physician currently in a Hospice and Palliative Medicine fellowship. I had the honor and privilege of being her mentor for 6 weeks while she was still a medical student. I was happy to hear that she chose this great field and she will be sharing her experiences with us during her time as a fellow.

“Watching Gunsmoke”

By: PalliNP

Marie was a tough matriarch of a family with five children and had lived through the Depression and WWII rationing without complaint. She had buried two babies and one husband and went on keeping her farm and mostly fending for herself.

Here she was admitted to the hospital with advanced COPD and as part of the workup her doctor has told her that she has metastatic lung cancer. She took the news with a stony silence and the oncologist left thinking he couldn’t get through to her. Her children, now in their 60s were upset and worried but determined to honor her wishes, whatever that might be.

I had visited Marie and her sons and daughters several times and it was clear that they wanted to bring her home with hospice support, but Marie seemed withdrawn and they couldn’t get her to say what she wanted.

I stopped by her room mid-afternoon and Marie was alone. “Sit!” she said, indicating a chair next to the bed. She was watching Gunsmoke on TV, and she took my hand without looking away from the TV. We sat in silence for 15 minutes or so, and then I heard a whisper:

“I’m afraid.”

“What are you most afraid of?”

“Pain and suffering.”

“We will do everything we can to keep you as pain-free as possible; you have to tell us when you hurt.”

“I know I’m dying.”

“Are you afraid to die?”

“No, I’m afraid of what comes before I die.”

“Are you worried the kids won’t be able to take care of you?”

“Yes.”

I then told her about hospice services, particularly that they are experts in managing pain and other types of suffering. I explained that they will bring in expert help to support her kids in her care, be available by phone 24/7, and be there for them when they need it.

“OK. Sounds good.”

When her daughter returned from her lunch, we were again sitting in silence watching Gunsmoke, but Marie was smiling.