A “sliding doors moment” is a seemingly inconsequential moment that ultimately changes the trajectory of future events in a dramatic fashion; read Post 71: How Palliative Care Can Change a Life - Sliding Doors Moment #1 for an example of how one offhand decision by an intern changes the course of a family's wellbeing and Post 75: How Palliative Care Can Change a Life – Sliding Doors Moment #2 for an example of how one glance at a gift basket triggers a nurse to perform an action that changes the course of a family’s wellbeing.
In this post, I begin a patient story (written in italics) and describe how a sliding doors moment alters how the story proceeds (written without italics).
Diane is a 54 year old woman who goes to the hospital emergency room for difficulty breathing because of a quickly enlarging belly. Her belly had been getting gradually bigger for the past month, but it became unbearable - painfully tight and hard to breathe - overnight. In the hospital, she is diagnosed with liver cirrhosis.
"What's that?" she asks the hospitalist.
"It's when parts of your liver are unable to function because of scarring. Parts of the liver scar when there is damage over a long period of time."
"Oh. Well, how did I get that?" Diane asks, "I don't drink or anything."
"It looks your cirrhosis is from something we call NASH, which is basically fatty liver."
"Oh."
Diane is discharged home with a list of three new medications. "This is a lot," Diane remarks, "I wasn't taking anything before!"
Diane shows up for one gastroenterology (GI) follow up appointment and refuses to attend any more follow up visits. She tells herself, "I feel fine! I stopped taking the meds for three days, which I didn't tell the doctor to see if he could tell a difference. He couldn't! He just told me to keep doing what I'm doing...so I guess I'll keep not taking the meds."
Over the next six months, Diane ends up in the hospital three more times, primarily for "painful stomach" from multiple liters of fluid build up in her belly and one time also for being "really out of it." Most of the notes in her chart begin with "54 year old Caucasian woman with NASH cirrhosis, non-compliant with all follow up visits and medications, not eligible for liver transplant due to non-compliance..."
After the fourth hospitalization, Diane tells her primary care physician (PCP), "I've already seen the GI doctor. He wasn't helpful. And I can't spend all my time going to clinics. You know I have to keep up with my jobs and take care of my son." Diane is the caregiver for Damian, her 27 year old son with Down syndrome.
Diane is admitted a final time into the hospital for painful, swollen belly and severe confusion. She is found to have very low blood pressure due to infection in the fluid in her belly, which spread to her bloodstream. She is transferred to the intensive care unit (ICU) and started on three life support intravenous (IV) medications to keep her blood pressure high enough to circulate blood to her brain.
That night Diane's heart stops - she goes into cardiac arrest - and the overnight team covering the ICU performs cardiopulmonary resuscitation (CPR) for thirty minutes. Diane's heart does not restart, and the overnight doctor calls a time of death.
The overnight doctor, Dr. C., calls Diane's neighbor and close family friend, Steve, who is listed as the emergency contact in Diane's chart. "I have urgent news to tell you about Diane," he tells Steve, "can you please come to the hospital as soon as you can?"
Steve shows up at the hospital nurse's station with Damian. "I'm here to speak with Dr. C. Dr. C. told me to come in."
The nurse pages Dr. C., who arrives at the nurse's station five minutes later. "Let's sit down over there where it's more quiet," he says.
"I'm sorry I have bad news," Dr. C. begins, "Diane came in already very sick with severe sepsis. We tried our best with antibiotics and pressors, but she went into cardiac arrest. We attempted CPR for 30 minutes, but we were not able to bring her back...do you have any questions?"
Steve and Damian stare at Dr. C. "Excuse me," Steve says, "Are you saying Diane...died?"
"Yes, and I'm sorry for your loss."
"But she was just okay two days ago. How could this happen?"
"As I said," Dr. C. replies, "Diane came in very sick. Sometimes patients who have end stage disease like Diane did can quickly decompensate, which is why she may have seemed okay a couple days ago. I know this is probably a lot to process. I'll ask the nurse to show you to Diane's room, and you can take all the time you need." Dr. C. stands up and steps out of the alcove.
"I don't understand," Damian turns to Steve, who is sitting still with shock, "I don't understand."
Diane is a 54 year old woman who goes to the hospital emergency room for difficulty breathing because of a quickly enlarging belly. Her belly had been getting gradually bigger for the past month, but it became unbearable - painfully tight and hard to breathe - overnight. In the hospital, she is diagnosed with liver cirrhosis.
"What's that?" she asks the hospitalist.
"It's when parts of your liver are unable to function because of scarring. Parts of the liver scar when there is damage over a long period of time."
"Oh. Well, how did I get that?" Diane asks, "I don't drink or anything."
"It looks your cirrhosis is from something we call NASH, which is basically fatty liver."
"Oh."
Diane is discharged home with a list of three new medications. "This is a lot," Diane remarks, "I wasn't taking anything before!"
Diane shows up for one gastroenterology (GI) follow up appointment and refuses to attend any more follow up visits. She tells herself, "I feel fine! I stopped taking the meds for three days, which I didn't tell the doctor to see if he could tell a difference. He couldn't! He just told me to keep doing what I'm doing...so I guess I'll keep not taking the meds."
Over the next six months, Diane ends up in the hospital three more times, primarily for "painful stomach" from multiple liters of fluid build up in her belly and one time also for being "really out of it." Most of the notes in her chart begin with "54 year old Caucasian woman with NASH cirrhosis, non-compliant with all follow up visits and medications, not eligible for liver transplant due to non-compliance..."
Towards the end of Diane's fourth hospitalization, the case manager covering all the patients on Diane's hospital floor speaks up during discharge rounds, “My uncle has the same thing Diane Sway has and his PCP had him see a palliative care specialist. Kept him out of the hospital longer. Dr. H., since you're aiming for discharge tomorrow morning, how do you feel about Ms. Sway at least following up with palliative care as an outpatient?”
Dr. H., a new hospitalist who had just started working last year, says, “I don’t know if Ms. Sway's at that point yet. I’ll defer to her PCP.” Dr. H. jots “pall care” on the margin of his patient list. Later that evening, while dictating Diane's discharge summary, he glances at his patient list and his eye catches on his scribble in the margin. He quickly adds into the voice recorder, “Will defer to PCP on whether palliative care referral would be helpful.”
Three days later, Diane's PCP rapidly skims the discharge summary for Diane's most recent hospitalization. “Oh, looks like the hospitalist recommended palliative care follow up. I'll send a referral to palliative care.”
The following week, the scheduler for a local palliative care clinic calls Diane to make an appointment. “Hello, your PCP asked us to meet with you to see how we could be helpful. We help manage any uncomfortable symptoms related to your medical disease and also recommend equipment, supplies, home health, and anything else that might be helpful for someone trying to make the best of living with complex medical issues.”
Diane, in the middle of washing dishes, pays intermittent attention. “I’m going to get evaluated for help at home? I could use that!”
Diane and Damian sit with Dr. L., the palliative care doctor, later that week in clinic. Dr. L. actively listens as Diane describes busy days trying her best to continue working by cleaning homes. "Occasionally I have to bring Damian with me to help, but those are only the days when I really can't breathe because of my belly. I've cleaned homes, small businesses, condos - you name it, I've probably cleaned it - for over twenty years. I hate letting down my clients when I have to go to the hospital."
Diane touches upon her personal history. "I used to do hair for celebrities when I was young...and I was good! But my mom got dementia and needed help, so I moved back home. I had Damian shortly after she passed away. Damian's dad hasn't been involved since he learned Damian had Down syndrome, and that's okay," Diane smiles at her son, "Damian is my angel."
When Dr. L. asks, "Diane, what have you been told about your medical situation so far?", Diane replies, "I have a liver problem. I saw a liver doctor who told me to keep doing what I was doing, and at the time I'd stopped taking my medications to see if he'd notice a difference, and he didn't. So I didn't think there was any point in going back to him. The doctors at the hospital always get me feeling better, but I wish they'd figure out what's going on with my liver and fix it so I wouldn't have to keep going back to the hospital."
Dr. L. asks Damian, "How do you think your mom is doing?"
Damian replies, "I don't like it when Mom gets sick because then I have to be home by myself. Steve comes by but it's not the same. I get scared whenever Mom can't breathe right and she says her belly is hurting. I don't want her to hurt. I wish the doctors could fix Mom so she wouldn't keep hurting."
"It sounds like both of you have had a lot of ups and downs these past several months."
"Yeah," Diane and Damian both respond.
"Diane, can I ask you," Dr. L. pauses, “Has anyone talked to you about what’s expected with this cirrhosis and things like prognosis or life expectancy?”
“Noooo…”
“Would it be okay if we talked about issues that people with cirrhosis usually deal with and also, if you wanted to, average life expectancies and such?”
“Yes! I need to know that kind of stuff," Diane nods her head.
Dr. L. turns to Damian, “And Damian, how about you, would you want to stay in the room while I talk about your mom’s medical condition or would you rather step out?”
“I don’t know. Mom?” Damian looks questioningly at Diane.
“How about you go into the waiting room and watch the TV? Then we can talk about it together at home?”
“Ok,” Damian says and steps out of the exam room.
Dr. L. begins, “So, cirrhosis is scarring of parts of the liver that occurs with damage to the liver cells over a long period of time. Sometimes we don't know exactly what causes this damage. Now someone's cirrhosis is not stable when they have symptoms like fluid build up, confusion from ammonia build up, or vomiting with blood. We use medications, and sometimes procedures, to control these symptoms the best we can. I would strongly recommend you take your cirrhosis medications every day, and the GI doctor will adjust the dose up or down depending on how he or she sees how your body is doing. If someone is having to go to the hospital for any of these symptoms, that means the symptom is out of control and putting an enormous amount of stress on the body. It makes it more and more difficult for the body to recover each time and easier for it to get complications such as infection.”
“Ohhhh.”
“So, it’s important to keep taking these medications. It’s important to keep going to your liver doctor too because he will not only check on the status of your symptoms but also perform tests related to cirrhosis such as a screening test for liver cancer. People with this type of liver disease are much more likely to get liver cancer.”
“OHhhhhh. No one explained this to me.”
“I’m sorry that was the case. Do you have any questions so far?" Dr. L. asks.
"No... well, yes. So if these symptoms get worse and worse over time, what's the prognosis? Should I make plans for Damian?”
Dr. L. looks at Diane in the face and gently says, “Well, when someone’s cirrhosis is not stable and they’re going to the hospital again and again for symptoms related to their liver failure, their prognosis is on average months rather than years.”
Diane’s face turns white. She remains silent.
After a minute, Dr. L. asks, “Diane, I sense that you are surprised by this information. Can I ask what you’re thinking at this time?:
Diane exhales a long sigh, “Yeah, I'm surprised by this information. I'm a little angry too. Why hasn't anyone brought this up? I need to make plans for Damian's care!”
Dr. L. listens and nods as Diane shares more about her most pressing thoughts.
Dr. L. comments, “We always hope for more time. Regardless, for peace of mind, I would recommend you do think about guardianship and anything else you need to do to make plans for Damian's care. And our social worker can assist you on next steps regarding that."
"Yeah, I'd appreciate that social worker referral," Diane says.
"And there are a few other things I always talk about with all my patients,” Dr. L. adds, and she then proceeds to ask about a medical power of attorney for Diane [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)] as well as her thoughts on resuscitation (or CPR) attempts if she were to become so sick that her heart were to stop (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ).
At some point during the conversation, Dr. L. asks, “Has anyone ever brought up if you would be eligible for a liver transplant?”
Diane shakes her head, “No, I don't remember ever hearing about a transplant.”
“Well, part of this may be because of the misunderstanding resulting in your not showing up to the liver clinic. After hearing everything you've heard today, how do you feel about going to the liver clinic and not missing appointments?”
“Oh, I’m going to make an appointment today! And I’m going to show up and ask what I need to do to get a liver transplant!”
“Ok, that sounds like a plan. So we’re going to take these medications every day, monitor our weight every day, make a liver clinic appointment, and speak with the liver specialist. I'll ask our social worker to talk to you about making arrangements for your son so that he is protected and there is a plan for Damian's care no matter what happens to you. You’re going to talk to your neighbor, Steve, about being your MPOA and if he says yes, then we can complete the MPOA form together on your next visit here. You said you wanted to remain a Full Code for now. Last thing...has anyone during any of your hospitalizations brought up when someone might consider hospice support?”
“No, definitely not that.”
Dr. L. gives a small nod, “Well, since your current goals are to live as long as you can, stay out of the hospital, and keep symptoms under control so you can keep working for as long as you can, we’re going to focus on the things that will help the most in getting you to your goals (read Post 7: I Want the Best Possible Care for ME - Part 1 of 2). If, for whatever reason, your body doesn’t cooperate and keeps getting sicker or your body is not eligible for a liver transplant, and you were to get to a point where you wanted to focus on staying at home with your son rather than spend most of your time in clinics or in the hospital, then that would be the time to consider hospice medical support at home. This may be a good time to meet with a couple agencies and ask them how they could help you if your situation ever got to that point, so that you’re not scrambling at the last minute. What do you think?”
Diane agrees, “Oh yeah, the more information the better. But I’ve got so much going on now. Can I hold off on the hospice learning sessions until I get some of this stuff situated?”
“Sure!”
Diane goes home and follows through on the action plan that she had developed with Dr. L. Over the course of the next nine months, she adheres to all of her appointments and medications. She is added to the liver transplant list. Diane makes caregiver arrangement plans for Damian and talks to him regularly about the possibility of her dying so that he is not caught unaware. She tells her son, "Steve will take good care of you. Of course, I'm going to try my best to live for many years, but we can't exactly predict what will happen to my body. So no matter what happens, I will love you. And if I'm not here, I trust Steve to be here with you the way I would be."
Diane signs an MPOA document and later when she changes her mind about CPR attempts, she also signs an Out of Hospital Do Not Resuscitate (OOH DNR) form (read Post 6: Who Do I Tell if My Mom Does Not Want Resuscitation Attempts? - A Three Step Process). She meets with two hospice agencies to obtain more information about when/how one may consider accepting hospice level of medical care.
During these months, Diane is hospitalized twice more. The last time she almost dies however is notified that a liver is available; she undergoes a successful liver transplant.
Dr. L. and the rest of the palliative care team support Diane, Damian, and Steve throughout this time. During Diane's last visit to the clinic, three months after Diane returns home from her liver transplant surgery, Diane is told that she can "graduate" from the palliative care clinic.
Diane throws her arms around Dr. L. to give her a big hug and says, “I’m so grateful for all that you’ve done for me. I don’t even think I’d be here today if not for you.”
Sometimes a palliative care conversation changes the entire course of someone's life - and the lives of everyone who loves them - and this palliative care conversation only occurs because a nurse/ primary care physician/ social worker/ case manager/ hospitalist / other healthcare provider happens to think at a particular moment on a particular day, "Hmm, I wonder if a palliative care consultation could help."
By increasing awareness of how a palliative care specialist can support anyone - and their loved ones - attempting to make the most of living with complex illness, serious disease, declining health, or unexpected prognosis, I hope that more and more people will themselves request a palliative care referral.