Humanizing the Medicine: My Time with the Transforming End-of-Life Care Team

The swan featured in the SWAN Care Model.

As I wrap up my stay in London (how is this possible), I have spent the majority of my devoted project time with the Transforming End of Life Care team at the University College Hospital, both with its inpatient and community components. When speaking to past Watson fellows before I left, I heard time and time again how this way of learning is new, enthralling, and at times overwhelming. And by this way of learning, I mean entering spaces of expertise that you might not otherwise have had a chance to and being lucky enough to take part, even if for a small amount of time, in something innovative and truly amazing. Thus far, I have found this to be addicting; I feel like I am learning and doing more than I have ever been able to. My notes app the past month have been littered with random musings, poetry, and ideas that I am nervous will flit in and out of my head, to be replaced by the next thing. At the same time, it can be overwhelming to process all I am witnessing, especially when I don’t have time during the week to sit and write. 

There were a million times these past two weeks where I wished I had more time to just reflect, which of course was happening in scrawled sentences in my notebook or phone, but not in a more significant way. Every time I let my mind run away in this fear of needing to have it all written down, I pulled myself out of the learning experience and became too fixated on how quickly time was flying by. But what I’ve realized is that devoting downtime to distilling and sitting with all my thoughts is far better than writing a post for anything that comes through my head at all. So with my time with the TEOLC team at an end, here are some of my thoughts about being on the inside of end-of-life care in London. This is a longer post distilling all I have learned into summaries of projects and my reflections (towards the bottom), so as always take what you want and skip through what you don’t! If you have the time to read only a small piece, skip to the end to hear about how my thinking about my project has shifted in just this short amount of time.

About the Team

Establishing the AMBER Care Bundle

The Transforming End of Life Care team (TEOLC) was birthed over a decade ago from a recognized need for a differentiation between palliative care and end-of-life care. As I have spoken about already in other blog posts, palliative care is often erroneously made to be synonymous with end-of-life care; however, the goal of palliative care has been and always will be to alleviate symptoms of life-threatening or life-limiting diseases. With medicine in the UK being socialized and all governed under the NHS, each hospital is considered its foundation trust under the NHS. The University College London Hospital NHS Trust had just begun to discuss how palliative care was underutilized by the hospital and its patients due to fear that palliative care was equal to death. Around the same time, the UK passed the Care Act of 2014 which legally bound “local authorities” (individual NHS trusts and care facilities) to make advanced care planning and end-of-life care conversations regular and required practice.

In response to this act, UCLH formed a group to help roll out the AMBER care bundle – a protocol that was going to help with the early identification of patients who have an end-of-life diagnosis such that these now-required conversations could take place. In other words, the group was meant to teach all clinical workers (doctors, nurses, ward sisters) how to recognize end-stage disease. The hope was that earlier conversations around advanced care planning could ensure that patient’s autonomy and choice were protected. This project was supposed to be completed, meaning all departments would have training, in just two years. However, the convened group responsible for AMBER quickly realized that clinical workers around the hospital would need more time to get used to this way of thinking and acting. Thus, they instituted a switch from the stringent AMBER care bundle to an intermediate stage: the treatment escalation plan.

Treatment Escalation Plan (TEP)

The idea behind the treatment escalation plan was to have a document that felt more comfortable to clinical workers than something like an advanced care plan (ACP). An ACP is something that anyone can make and can be considered a “note” that doctors may take into consideration. However, it’s not legally binding and it can be very extensive; elaborating on all of the patient’s physical, mental, spiritual, and financial needs and more. In theory, it’s a perfect way of understanding all the needs of a patient allowing clinical workers to help the patient keep autonomy during their final days. However, in practice, it’s far too time-consuming for a fast-paced medical system and to work best it must be done early, before a patient loses capacity, which requires early recognition.

Thus, what was the group responsible for AMBER and more ACP, switched directions to devise documentation that shortened the ACP process with a focus on the early stages of end-stage illness. The result was the treatment escalation plan – a document that truncated the important information from the ACP but mainly focused on the language of what a patient would or wouldn’t like the treatment plan to be if their disease were to escalate and more extreme interventions were required. This documentation includes decisions about breathing treatments, medicine administration, and overall what you would want to happen if you started declining due to disease. It also includes acknowledgment of a DNACPR (do not attempt resuscitation), which is similar to a DNR in the USA, except not notarized and in some cases, not legally binding. It used to be that only a DNACPR would be documented but the TEOLC team’s amazing fellow has found that the DNACPR is not sufficient because doctors are left to make assumptions about any type of escalation in care. Thus, the DNACPR is being bundled into the TEP so that it is clear that resuscitation is not wanted but perhaps other types of escalation are. Moreover, the current fellow at the TEOLC has been implementing hospital-wide welcome leaflets that go to every patient and that include information about advanced care planning; the hope is that giving everyone access to this information immediately will normalize these conversations when they do need to happen as everyone, regardless of status, could benefit from thinking about their wishes and needs.

As the team started rolling out the more consistent use of the TEP, they also simultaneously continued early recognition and conversation training across all wards (departments in the US). The training helped clinical workers develop a general plan for approaching a patient with a terminal diagnosis such that conversations like the TEP could happen earlier, giving clinical workers and family members clarity as soon as possible about the patient’s needs and wishes. This training followed the original intentions of the AMBER care bundle in that the hope was to help clinical workers facilitate patient’s ability to have choices in their care. While these choices would look different for each patient, early recognition and conversations would ensure that at the very least choices are made available to each patient. Right now, the TEOLC team is implementing the use of the RAG system across wards; each patient is labeled as Red (days to live), Amber (weeks to months), Blue (several months), and Green (years). These designations are made by the doctors on each ward, allowing them to know which patients should be having these advanced care planning conversations and also allowing the TEOLC team to monitor that these conversations are happening with the right patients at the right time.

With more established projects and charity pilot funding, the team that originally was the AMBER Care bundle group became the Transforming End of Life Care team. This move effectively did two things: first, it allowed to take on more innovative projects and planning that would improve end-of-life care at UCLH, and second, it allowed the palliative care team to establish itself more as the symptom control team and work against the stigma of palliative care as exclusively about dying. While there have been no longitudinal metrics to establish this effect, the idea was to try to increase the utilization of the palliative care team by removing some of that fear for patients and their families.

Incorporation of the Electronic Medical Record (EMR) and the Excellent Care Plan

In 2019, the medical records at UCLH went from paper to electronic, much like many of the systems in the US. The TEOLC team quickly responded by getting templates for TEPs loaded directly into the EMR, allowing for their quick utilization and the ability for wrap-around service as the EMR could be seen by outside general practitioners, community services, and all hospital staff who may come in contact with a patient.

Additionally, the TEOLC team recognized the need for further documentation outside of the TEP that would be specific to the dying phase. While TEPs established what the patient would want should their disease get worse, the TEOLC team understood that a separate conversation was needed by doctors to patients to communicate that dying was actively happening. This was not only so that the patient was aware, but so that the care team could document any specific wishes the patient and family may now have including whether they wish to be discharged home or to hospice, care of the body after death, medicine administration, spiritual care, and more. The plan became known as the “Excellent Care in Last Days” document.

To ensure uniform use of this plan and recognition that the dying phase may indeed be occurring, the TEOLC team once again turned toward the EMR. At UCLH, as a patient declines, clinical workers (likely nurses) fill out symptom observations using numerical ratings. If the ratings of these symptoms reach a certain grade, the Excellent plan will automatically pop up and prompt consideration by the team. At the same time, the patient auto-populates to a list that the TEOLC team can access such that they can be aware of and provide support for care teams who have patients at the end of life.

Notably, both the TEP templates and Excellent Care templates were in use via the EMR by the time COVID-19 hit. Doctors could then use the TEP upon admitting a COVID patient such that a care plan was already in place. When this time was being explained to me, I couldn’t help but feel the impact of knowing the patient’s wishes during the pandemic. Having heard the horrors of ventilator shortages and patients dying alone directly from my dad who is an emergency room physician back home, I was amazed that these forms allowed for more humane conversation during this time. While the pandemic brought up the ethics of how people are dying in hospitals in the US, UCLH was already thinking about it, allowing them to form a special ethics team during the pandemic to help make informed decisions using TEPs and other documentation about withdrawing care such as ventilators.

SWAN Project 

Another one of the TEOLC’s implementations at UCLH is the SWAN project. SWAN stands for Sign (of the Swan), Words (sensitive communication), (Compassionate) Actions, and Needs (of the patient and family). The Sign piece comes from the offering of a picture of a swan to patients and families to signal to all workers in the hospital that someone is dying in this room. The swan picture symbolizes a request for increased sensitivity and compassion when engaging with this family; perhaps, the catering team makes more frequent offers of coffee and tea, or the domestic staff enters to clean less, or volunteers offer art or activities for young family members.

With the offer of the swan picture accepted, the family is also offered many other items from the TEOLC. They are given the option of a “SWAN radio” so that the patient can have constant music playing, a SWAN bag to use around the hospital so staff can be aware and check-in, and a comfort pack with toiletries and other useful items for long hospital stays. The TEOLC team also facilitates numerous memory preservation techniques such as the offer of making a hand imprint or giving families Ruth Strauss cards and booklets which help children cope with the dying of a family member. 

All the items included in the SWAN Care Model Package. Top Center: Swan decal that is hung on the door of the dying person.

Capacity and Best Interests

The caveat to almost all the programs run by the TEOLC is that a patient must have the mental capacity to make decisions about their treatment. Each time a decision is being made, whether it is during a TEP, Excellent Care during Last Days, or other conversation, the clinical workers involved must perform a capacity assessment according to the Mental Capacity Act. The MCA was designed to protect those who couldn’t make informed decisions about their care; it ensures that no party related to the incapacitated individual could make a decision that goes against their best interest.

In a perfect world, doctors and other clinical workers would have TEP conversations and end-of-life conversations before a person becomes so sick they are incapacitated. This is where the training for early recognition of life-threatening illness and dying symptoms comes into play. However, there are many diseases or symptoms of disease progression that may result in mental incapacitation such as dementia, stroke, sudden arrest leading to brain injury and coma. In these cases, the UCLH team holds what is called a “Best Interest Meeting” where all those who have a stake in the patient (doctors, nurses, ward sisters, safeguarding nurses, family members, guardians, etc.) meet to determine the next course of action. For the meeting to officially conclude, all present must agree so no one party can leverage their position concerning the patient above another. In this way, a conclusion is reached that all agree reflects the patient’s best interest from medical, physical, social, religious, and spiritual perspectives.

Moreover, and far differently than the United States where family wishes can trump doctors, doctors in the UK are not required to perform treatment that is not beneficial. If three doctors agree that treatment would be more harmful than helpful, doctors can refuse to perform it. To avoid this in the first place, a patient who has decision-making capacity is usually presented with a menu of treatment options written by their doctors and the doctors do not have to perform a protocol that is not on the menu they have put forth.

Discussing ethics, capacity, and best interest protocols during one of many educational training sessions I attended, led by TEOLC team.

Reflections on Lessons Learned at UCLH

Hope

One of the biggest takeaways from my time with the Transforming End of Life Care Team at UCLH was hope. When I first decided to come to the UK as my first country for the Watson and work with teams that represent a gold standard in the field (see ranking), I was nervous that my learning, although inspiring, would be disheartening. So much of the UK’s success can be attributed to universal healthcare. This makes things like hospice stays, palliative care, and clinical bereavement services more accessible to all. In the US, our system of privatized care means that these services are wildly inequitable, inaccessible, and therefore underutilized. However, what I found with the Transforming End of Life Care team was that many of their projects are seemingly feasible to implement in the US having more to do with training, communication, and treatment flow than anything else. This, yet again, made me feel as though any path I go down to understand end of life care better will inevitably lead me back to language and its role in creating a culture where concise and person-centered conversation about death and dying begets better care holistically.

While these training and communication documents are feasible in the US, they demand doctors to be more open to end-of-life treatment as a form of care rather than the default being life-extending measures that sometimes do more harm than good. When I asked Jo at TEOLC about this culture, she said that while they have made strides, there is resistance to this way of thinking even here. She was quick to emphasize that with rose-colored glasses removed, the program has faced many challenges. Not everyone can so easily accept the necessity of plans like the TEP or Excellent Last Days plans. However, she said something that will now stay with me – she said “Start where you get engagement and let it trickle down until those who resist change become the outlier.” I think this statement applies to any movement and is different than how I once thought about end-of-life care advocacy. There is this pull to go into spaces where there is the most resistance to a change in how care is done and argue until I am blue in the face that this an issue worth being addressed. However, I think stepping into spaces ready for this work but in need of direction will help to make a convincing argument for how changes like the TEOLC team has implemented make a difference in the care of dying people.

Another aspect that made me hopeful besides the feasibility of some of their bigger projects was the TEOLC’s use of simplicity. In the US, I have spent time in labs and clinical settings where fantastical, innovative, and incredibly complex science and medicine are being carried out. However, it took me coming face to face with the picture of a swan on the door of a dying person’s room to realize that complexity doesn’t always equal most effective. The astronomical effect of something so small and obvious – a single that someone is dying in this room – was felt immediately. Traffic by the room was quieter allowing for peace to have a place in an otherwise crowded hospital, coffee and teacups were always full, and nurses communicated more frequently about when the last time someone had been in to see the family was. There’s nothing special per se about the laminated swan that hangs on the door but the environment it creates is almost indescribably different than anything I’ve felt in a hospital before, both in a clinical capacity and as a patient myself.

A Notable Shift in Thinking

Finally, and arguably most importantly as I continue to explore what dying well entails around the world, I have begun to chip away at the role that choice plays. Throughout this post, I have spoken about early recognition leading to decision-making conversations and advanced planning that elaborates on needs and wishes, all so the patient can have a choice in how they die. Even when the patients themselves cannot make these choices, it is good practice in the UK to convene a best-interest group that must come to a common solution. Thinking about the US, there are so many things that make end-of-life care inaccessible and insufficient but I can’t help but reflect on the idea that the lack of choice facilitation is key to so much of this failing system. There are horror stories of people on machines for ages, existing for years in irreversible comas, or even children who no longer wish to continue treatment not having a say because they are under 18. In the UK, doctors can and do exercise care that is in the best interest of the people they are treating even if that supersedes what family members may want, especially in the case of pediatrics. In other words, the UK sees patient choice as an integral part of patient care. Trying to see medical care through this lens of choice this week has also led to another conclusion (one I had a sneaking suspicion of that is now confirmed) – a "good death" will never have one definition. It will have 7.9 billion because as individuals, we will have different ways we define a good death. For some, it may be that having these advanced care conversations facilitates a good death by allowing them to return home or as one person this week said – demand a flat white be delivered to them each day regardless of their swallow status. For others, for cultural or religious reasons, it may look like refusing to talk or plan for death at all or allowing a family member to make all of their decisions. For all my reading, research, and interest in conceptualizing what I believe a good death might look like over the year of planning my project, I am once again allowing for a shift in thinking and the project. No longer am I seeking to define "dying well" in totality but rather seeking an understanding of the ways that a "good death" is facilitated globally to align with how individuals choose to define it.