Caring for patients with advanced illnesses has always been in the wheelhouse of palliative care practitioners in the American healthcare system. This challenging work took on new proportions, scope, and dimensions with the onset of the global coronavirus pandemic.1 There was a pronounced shift in how palliative care was perceived and the skill set that could be brought to the bedside of patients and their families suddenly facing serious and, many times, unexpected illness. COVID-19 increased the need for management of the debilitating symptoms of shortness of breath, fatigue, GI complaints, and pain. It also forced patients, families, and the medical community to address end-of-life care and goals of care in a way not previously experienced.1,2
Having difficult conversations with patients and their loved ones was made exponentially more challenging as a result of social distancing, lack of in-person family meetings, and the inability of people to see for themselves, firsthand, the experience of being at the bedside of a loved one who may be facing the last days or hours of life. Physicians, nurse practitioners, and other providers who were not used to having these conversations found themselves in an uncomfortable space. This is no fault of the practitioner.3,4 The medical education system does not properly equip practitioners in the art and skill of communicating bad news or how to help patients and families set goals when illness becomes advanced.5 This lack of training leads to continued, aggressive, at times, burdensome care that does not translate into a better-quality life or change the outcome. It does impact how the patient experiences the outcome, and, potentially, how the family feels about the outcome. The default is to keep treating, keep intervening, thereby prolonging the dying process but not adding to the quality of the patient’s life or allowing for conversations if things do not go well.
Many times, appropriate end-of-life care in the United States has been lacking. Defining end-of-life care not in terms of the last hours and days of life rather than the weeks, months, and sometimes years is an ongoing challenge. With emerging technology and skills, we have abilities to prolong life that we did not have in the past. What we have sacrificed in the mix is the skill of prognostication.6 Studies have shown that physicians correctly prognosticate for seriously ill patients approximately 20% of the time. Most overestimate life expectancy and few underestimate the remaining time a patient may live.7 This creates the perfect storm leading to overtreatment and poor communication when time may be short. The best analogy is the patient and family are left standing at the side of the road watching their house burn down. People continuously are driving by, stopping, and not talking about the house that is engulfed in flames. The patient and the family know it but no one seems to be talking about it. Instead, these well-intentioned participants talk about what they can do. The family may be thinking “gee, I think the house is burning down” and the response may be “I’m the window guy, they called me to fix the window.” The next may say, “I’m the carpet guy, they called me to get a spot out of the carpet.” We keep doing things “to” the patient that do not end up being “for” the patient. When the family asks, “is there anything else you can do?” We are comfortable saying, “yes, we can now try. XYZ intervention.” It is difficult to communicate and to envision the end point when we are not sure ourselves where that end point actually lies. In our honest attempt to give patients and families good news we sometimes forget to provide good information. Information that will communicate the gravity of the situation, define what we can reasonably hope for, and provide a reasonable transition to the next appropriate level of care for the patient. We feel comfortable in our knowledge about what the next step is but we are unsure how to navigate care when the “next step” may be futile or burdensome to the patient without providing any clear benefit. COVID has greatly exacerbated this deficit in our system. Not only are we faced with increased numbers of patients who never thought they would be facing a potentially life-limiting illness, but our clinical workforce has been tremendously overburdened and underprepared to have discussions about the benefits and burdens and about the options for care.8
One big shift in the utilization of palliative care at the height of the COVID crisis happened in emergency departments.9 At the point of entry, palliative medicine was consulted on COVID and non-COVID patients. Recognizing patients who were at risk for poor outcomes came front and center. Conversations about goals happened simultaneously with the administration of life-saving interventions. Families were given the opportunity to weigh in prior to intensive care unit (ICU) transfer or aggressive procedures. Make no mistake, these were patients who, at baseline, were debilitated, dependent on others for their care, had advanced medical problems, and were lacking documented advanced directives or POLST forms. In a perfect system, this would be the way these conversations happened on regular basis. In a utopian system, these conversations would happen outside of the hospital, in advance of a medical crisis, hopefully thereby eliminating the transfer to the emergency department.
This shift to emergency department palliative care consults highlighted another glaring hole in the system. The lack of a 24-hour palliative care practitioners present in the hospital. Our system of 11 hospitals had set up a 24-hour palliative hotline that clinicians could access to help with complex symptom management. This did not provide consult support to speak with families to determine goals of care and to weigh options for treatments being proposed. The calls to the hotline proved to be for symptom management at the end of life. Clinicians called for assistance to control shortness of breath, secretions, agitation, pain, and other distressing symptoms in the last hours to days of life.
Early on in the pandemic there was a distressing amount of misinformation and false information about the virus and its spread throughout the country. None was more damaging to the situation than the notion that the virus was a hoax; it did not exist and was being blown out of proportion by political, conspiracy, and social groups for a variety of unknown purposes. Meanwhile, clinicians were experiencing the devastating destruction the virus was perpetrating on the patient. Individuals who appeared to be stable and recovering suddenly became so ill and were overwhelming critical care units. Relatives unable to see their loved ones in person were asked to rely on FaceTime meetings with medical providers and virtual visits with family members.
Mrs. R, a 68-year-old immigrant, presented to the hospital with a fever and shortness of breath. She had a history of diabetes, hypertension, heart disease, and chronic kidney disease. She tested positive for the virus upon her admission the hospital. She was from an Asian country and spoke only a specific dialect of the country’s language. The language line was used to communicate with her when she was able and her illness allowed. Her husband did not speak English and requested communication take place through his two sons. Conversations with the sons had grown increasingly contentious and ended with them hanging up on the medical team who were attempting to communicate what was happening clinically with their mother. The sons clearly stated they did not “believe in the virus,” that we were “lying to them” and we had all “bought into the hoax that there even was a virus.” Over the course of 5 weeks she required intubation three times. After the third intubation it was clear she would not be able to sustain herself off the ventilator for any period of time. Thus, the conversations began about goals and the next steps. The family was clear the patient would not want a tracheostomy and feeding tube but refused to make the patient a do not resuscitate (DNR) and discuss the goals without these interventions. We invited them to meet, in person, with the critical care and palliative medical doctors. During the meeting, the sons became angry and hostile. At one point, one son yelled, “why are you two still insisting on this virus story?” “Who are we supposed to believe, the two of you or the government?”
My instinct was to say “the two of us.” My training told me that that would be a losing position to take. At that point, he believing or not believing in the existence of the virus was secondary to the patient’s immediate care needs. Arguing about how we arrived at this day would not advance the goals of the meeting and was sure to set up an “us against them” dynamic.
We let him vent for a while and then let silence overtake the room. This technique may seem like it takes valuable time away from the conversation, but it will save time and emotional energy for everyone involved. Once the silence settles, you have the opportunity to reintroduce the goals. We were able to review her clinical condition in detail discussing what was possible and what was probable. We showed them the patient’s X-rays and why these test results were concerning to us and how the picture was impacting her ability to live off the ventilator. We discussed cardiopulmonary resuscitation (CPR) and the likelihood of aggressive interventions being beneficial at this stage of illness. We also discussed the burdens of those interventions. The family did agree to DNR status by the end of the meeting but not to the tracheotomy or percutaneous gastrostomy (PEG) feeding tube. They also did not consent to directing all care toward comfort.
In the coming days we had additional virtual family meetings attempting to address goals and a plan going forward. The meetings ended the same: no trach, no peg, no comfort care. The sons seemed to want another option that did not exist. I invited them to the hospital again to meet face to face. They begged to be allowed into her room to touch her and talk to her. They said they felt if they could talk to her in her own language, encourage her to get better that things would start to change. I asked what they would tell her if things were not able to change and that she truly was at the end of her life. One son looked at me and said, “we have to tell her that we are sorry.” He explained that his mom was considered a peasant in their country, uneducated, unable to read, and they reminded her of this throughout their lives. They felt they treated her as a servant and did not respect as their mother as they should have all along. I left the conference room and called administration. I explained we need to let this family into the room and why it was imperative to the patient’s care at this time. Permission was granted. I returned to the sons and husband. I acknowledged they did not believe the virus was real, but they would have to adhere to wearing appropriate PPE to be allowed into her room. We discussed how they should use the time with her as it would only be one at a time for ten minutes each.
One by one they entered the room, held her hand, and whispered something to her as she lay tethered to the ventilator. Each came out tearful but calm. The family gathered again in the conference room alone. We reentered the room and asked if they had any questions or thoughts. The eldest son said, “we need to let her go.” Just barely above a whisper but with conviction.
There were many things broken in this family. Our interactions with them could have been better from the beginning. Their refusal to acknowledge the virus became a focal point of frustration and energy rather than the patient’s needs. The emotional situation between the family and the staff deteriorated as a result. This reminded me of working with a family who was frustrated by an Alzheimer patient. A daughter once told me about a daily, frustrating encounter she had with her mother. Her mom would pick up a blanket telling her someone named Paul made it for her. The daughter would daily say, “mom, it was your niece, Mary, that made the blanket.” I asked her why she did that every day. The daughter said to me, “I correct her so she will remember for the next time.” I pointed out that she would not remember and you will continue to be frustrated by her inability to remember. I suggested the next she say, “Wow, Paul must really like you” and put the blanket aside. Focusing on the family’s belief that the virus was a hoax gave us something other than the patient’s care and goals to discuss and/or argue about. We wanted them to acknowledge the existence of the virus that we almost missed what was driving the pain, frustration, and anger in this family. They needed to heal the emotional wounds they perceived they inflected over a lifetime before we could ask them to move forward with deciding the best way to manage her care needs.
How many times in critical care and medicine in general have we heard this response over the years? We diligently present the facts and data about why the body is failing only to be met with this particular battle cry from those closest to the patient. “We hear what you are saying but you do not know her. She is a fighter.” This is a statement that tends to stymy practitioners who then continue to move forward with care and interventions that we know or highly suspect will prove futile in hindsight. During COVID, as the onslaught of patients increased, we were faced with family members who had little to no warning that their loved ones would be facing a potentially life-limiting illness.
GW was a 73-year-old gentleman who presented with shortness of breath to the emergency department. He had been diagnosed with COVID 5 days prior to his presentation by his primary care physician and was instructed to present to the hospital, should his symptoms worsened. Initially, his respiratory failure was stabilized with the use of Hi-Flo oxygen and Bipap. As his condition worsened, Palliative Care was consulted to review goals of care and a plan going forward. During the initial consult, the patient was able to say that he was ok with being placed on a ventilator but he did not wish to be on a vent long term if he was not able to be extubated. In the early days of his hospitalization, his wife was also admitted and required intubation. She experienced multisystem organ failure requiring the use of pressers and dialysis. Eventually, she could not tolerate hemodialysis and was transitioned to continuous veno-veno hemodialysis (CVVHD).
Mr. W’s brother had power of attorney for both of the patients. As each patient’s condition worsened, the team had a number of phone and video conferences with the family. It became clear that code status for both would need to be discussed in detail and clarified. The conversation was detailed and family input was sought throughout. At the end of the call, the family elected to change the code status of both patients to DNR. Mrs. W’s condition continued to worsen over the next 2 weeks. She was profoundly hypoxic while on ventilator settings of 100% FiO2 with oxygen saturation’s hovering in the 70s for days regardless of the interventions attempted. Despite maximizing the use of vasopressors her blood pressure remained almost incompatible with life. The family refused to consider directing all care toward comfort. The war/assault on her body continued until one day, after a number of weeks, she became bradycardic and died.
The family meetings now were completely about Mr. W following the death of his wife. He, also, required high levels of oxygen and could not be weaned from the ventilator. Over the course of the next 4 weeks, the team had a number of calls with the patient’s brother to provide updates and discuss goals. We shared his brother’s conversation prior to being placed on the ventilator. Despite his worsening condition, the family elected to proceed with a tracheostomy and a feeding tube. Patient appeared to be awake but was not interactive and unable to follow commands. Imaging of his head and neurological testing did clearly define what we were seeing clinically. We expressed concern about the benefits and burdens of the present level of interventions. The patient’s brother invoked the all familiar battle cry, “I hear what you are saying but my brother is a fighter.” Before diving into that pool to respond, I asked had they ever experienced anyone who was on a ventilator who required a tracheostomy and a feeding tube. Yes, was the response much to my surprise. Their mother had suffered a catastrophic stroke a number of years ago and required the same interventions. I asked them to share with me that experience. Once their mother was on the ventilator, the four children were split on how they should proceed. Two (including our patient) thought they should let her go peacefully and the other two thought she was a fighter and could recover. Unable to come to a consensus she remained in that condition for 4 years until she eventually died. She never regained consciousness or returned to her previous functional status. There was that phrase again, “She is a fighter….”
At times like these we are charged with helping the family reflect on what it means to be a “fighter.” We discussed how it speaks to GW’s spirit, his emotional, mental, and psychological state. It is what enabled him to strive, to achieve, move forward when the odds seem against him in life. However, as the body fails the spirit cannot overcome that devastation. It is at that point that we leaned into the conversation and asked, “what is the goal if the breakdown of the physical body overcomes the will and sprit to live.” It is a fact that every human must face as life comes to an end. We cannot change that as doctors or healthcare providers but can help guide patients and families on the journey. Sadly, this family pressed on for 48 days. The patient continued to deteriorate; he received the tracheostomy, the feeding tube, and was eventually transferred to a long-term acute care hospital where he died 12 days after his admission.
The lesson here is we cannot change the outcome for patients in many circumstances. The risk is how the family feels about the outcome after it is over. In 2 or 5 years they need to be able to look back on the situation and know they did what they thought was the right thing for their family member.