Many of you may have already seen this video, however, from the time I first saw it, I wanted to show anyone that would sit down for a few minutes to watch it. I think we often wonder what’s the best way to disperse important information to the masses and I think ZdoggMD has found that way. Although many of his videos are funny parodies of songs to teach or just to have fun, this is one in which the tone is serious. As those of us who work in the health care field know, advance care planning is not often done. Poor unsuspecting families, unaware of what’s to come during an unplanned medical event, often get blindsided when their loved one is in the hospital. Their loved one is no longer able to make their own decisions and the hospital physicians and staff are looking to them to make difficult medical decisions. Atrocities occur daily in the ICU, especially to people with advanced chronic illnesses or age because the family who is left behind to deal with these issues is feeling an emotional roller coaster of guilt, uncertainty, anger, fear, selfishness and anxiety (to name a few) and are often paralyzed to make difficult decisions. I think the Coalition for Compassionate Care of California (link below), an organization responsible for implementing POLST in California, has done an immense job in actively taking this issue a huge step forward. With the help of the Coalition, National Healthcare Decisions Day (link below), ZdoggMD and countless other organizations and healthcare professionals we can make a change one person at a time. Please share this video with your family, friends and colleagues. A big shout out to #ZdoggMD!
“I’m happy to see that he’s stabilized for now, but it’s also a good time to revisit your family’s goals for Brian for when another episode like this happens again.”
Brian’s father’s eyes widen, he whispers, and he motions for me and his wife to join him in the adjoining living room.
Here we go again.
I lean in to speak to Brian, my 21 year old patient who’s been living – some may call it anyway – with advanced Lou Gehrig’s Disease for the better part of his adolescence. I let him know that I’d be back to examine him shortly. I’m certain he’s been “locked in” for quite some time, but I have no idea how much he actually hears me. I’ve tried to speak openly in front of him before, but out of respect for those who’ve known him all his life the serious conversations are always deferred to the living room space as they feel heavy topics may upset him. The patient’s corner is solely reserved for speaking about urine, ventilator settings, and g-tube residuals.
What every 21 year old wants to hear about. Poor guy.
I sit down with Brian’s parents. “We’ve been thinking about the code status again, and talking it over. We definitely don’t want him to have his ribs broken – we know he’s broken bones just moving before. I know we said change it to ‘DNR’ last time, but I think we’re going to leave him ‘full code’ for now.”
Dig deep for that patience. It’s not necessarily two steps back. They’re not the most difficult family on your census – cut them some slack.
“What made you change your mind?”
The father begins, “Brian’s mother asked him …”
Is she kidding herself? He doesn’t move, he doesn’t even blink his eyes! They may be agreeable, but they’re certainly some of the worst cases of denial I’ve ever seen.
“… and he expressed wanting to try. Maybe it’s not what we want for him, but we want to respect his wishes .”
Sincere. Delusional, but sincere.
“I know it’s a difficult decision. I don’t want to push you one way or the other. If you feel Brian and your family is not ready to make a change in his long-term plans, we can revisit that at a later time-“
The vibrator on my work phone goes off. I lean over to silence the ringer.
It’s probably not an emergency.
“I’m sorry. I just want to stress to you the importance of what I’m sure we’ve spoken about already. Though we’re not sure if X would survive a cardiac arrest, we do know that he would more than likely not be the same neurologically should he survive. His body has been through too much.”
The vibrator on my phone goes off again. I quickly silence it.
If this nurse doesn’t stop calling me I’ll never get through this!
I start again, “If you believe he knows then I would agree with your choice to respect his wishes, but if you’re not certain that he knows that, or think that he wouldn’t want that, then I would encourage you to make a decision about change sooner than later.”
Brian’s father speaks to his spouse in Japanese. There’s a heavy silence. She responds back in Japanese. Some more silence.
I sneak a peek down at my watch when they’ve looked away. I’ve already spent more time than I had planned here, but I don’t want to look like I have.
Am I giving too much of myself to my patients? Will there be any leftover for my kid?
Am I a good wife?
“I’m so sorry your family is going through this difficult process,” I add.
The parents nod. Then more discussion in Japanese. More silence.
I hope my Mom is okay. I should call her.
I don’t speak Japanese, but I notice the parents’ tone changes. Even the silence changes. The mother is nodding, holding the father’s hand.
I look over at Brian – lying motionless in his hospital bed, eyes fixed ahead at the ceiling. His silence is heavy, too.
He must be tired, too.
Or is it projection? When was my last vacation?
The silence breaks. Brian’s father speaks –
“We think that Brian would still want to remain full code even if he knew he wouldn’t be the same.”
Great article by blogger Ann Brasco (Twitter @annbrasco). A powerful paragraph in her entry which stood out to me reads, “Maybe its about less doing and more just being present. In a world that pushes us to fix, cure, act and immediately alleviate, the value of just being present is often overlooked.” Early in my Family Medicine career and while contemplating doing a fellowship in Hospice and Pallative Medicine a chaplain took me on a visit and taught me the value of just being “present.” Sometimes two souls sharing the same space, the same air, the same warmth is more meaningful than we’ll ever know.
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.
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.
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:
“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?”
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.
There are many times after a family meeting when I have to take a deep breath and remember that I’m leaving this patient and family and going home to my family. I’m sure we all feel at times that families make decisions for their loved ones that we don’t agree with as palliative care professionals. I have to remind myself that families I often meet with will make decisions that they will live with the rest of their lives. In the future I may remember this patient or that situation but my personal life most likely will not be affected by the decisions of others. This is the reason at times we have to take a deep breath, take a step back and let others live their lives as they see fit. I decided to write this because I most recently did a palliative care consult for an unfortunate male in the ICU. The patient has a history of CHF, liver cirrhosis, renal failure and a long list of other problems. He recently began to physically decline with decreased appetite, weight loss, decreased mentation, hypotension and hypoxia. After several discussions with the physicians, the wife did make him a DNR with pressors since he was already on pressors. He currently has a poor prognosis and all physicians including consultants are documenting “poor prognosis.” Knowing that this patient will get worse during this hospitalization, we held a family meeting to discuss the “Goals of Care.” To make a long story short, the wife decided that she wanted everything done, short of CPR and intubation, because when he dies she wanted to make sure that “I did everything.” We tried to reassure her that when a patient is dying MANY THINGS CAN BE DONE to assure that he is comfortable. We also tried to reassure her that there are ways she can be involved at the bedside while he is dying. Despite our explanations of possible discomfort at the end-of-life with continued agressive treatment, and despite our explanations that continued aggressive treatments would serve only to prolong the moment of death, she continued to voice that she wanted “everything.” Unfortunately we see this quite often as the role of medical decisions and expertise has been given to the families by the physicians. Physicians often say they don’t want to be sued and therefore will present the family with a menu of options and the families can pick and choose what they want. This is why we will see an order such as “Yes CPR, No Intubation,” or “Yes ACLS drugs, No CPR.” Often times the nurses will see me take a deep breath as I walk out of the ICU while shaking my head. I then remind myself that people have to live with their decisions in the context of their culture, religion and understanding of life. I may not agree with it, but I have to remind myself that it’s not my life. I then smile as I drive home knowing that my family is waiting for me at home.