Every day in every hospital the interaction between a patient and provider can vacillate between fear and hope. Often, though unspoken by the care team, there is a fear of doing too much for too little. It is this space that palliative care can exceed expectations, not only palliating the patient, but the clinical team as well. Palliative care is often seen through a lens that is focused on the benefits to the patient. The connotation seems to be that the patient is the one that benefits yet this approach belies the benefit that all involved gain including the care team. Clarifying goals of care in the context of the patient’s values often reduces the moral distress of clinicians as it relates to the idea of futility, poor communication, inconsistent care plans particularly involving end of life decisions.1 In short, palliative care not only reduces suffering for patient and patients’ families, it reduces suffering for the healthcare professionals involved.
Moral distress
Moral distress is the resultant emotional aggregate of powerlessness, anger, frustration, and guilt when one cannot practice according to personal ethics. Many causes have been identified but generally revolve around quality of care, amount of care provided, and support/resources. 1,2
Futility is often cited as a factor relating to burnout.1–3 On the surface, medical futility seems like an easy concept to convey to a family or patient with worsening health. Simply put, the therapy should not be performed because the data shows that it will not work or improve the health of a patient. Unfortunately, the term futile is subjective and is plagued by little known outcome data when considering specific therapeutics in a particular situation without a consensus on the statistical threshold that is considered futile if this outcome data is known. Others suggest that the term futility may represent a decisional power struggle between the clinical team and patient and/or family. Effectively this term may imply divergence between these groups.4
For healthcare providers tasked with curing, there are certain times when cure is not a possibility. This often creates an ethical landscape that juxtaposes pursuit of treatment of disease against treatment of suffering that can be jarring. A 2016 study showed a large amount of care providers in an ICU setting were likely to mention too much care provided as a cause of moral distress. Interestingly this study showed that there is a difference amongst care providers depending on the role played regarding what is “too much” with nurses identifying a situation as hopeless sooner than physicians. In addition lack of end-of-life conversations prior to admission, inconsistent care plans, and poor communication with the ICU team or between ICU staff and family created moral distress outside of providing care when there is perceived clinical futility.1 Another study showed that nurses and physicians alike ranked the perception of futile care as a root cause of moral distress. Unsurprisingly those that had left their job and those that were considering leaving their job now or prior had higher levels of moral distress.2
Along the same vein, clinical disutility can also be difficult. Though treatments or interventions may technically succeed, they may fail to obtain or maintain congruency with patients stated or unstated goals. For example, a patient with advanced heart failure may have interventions ratcheted upon them without necessarily feeling like their quality of life has improved. For those patients that would have died earlier and potentially on their terms, life has now been extended filled with complications and burdens that may have been underappreciated up front. Though extension of life may be possible that life may not meet the litmus test of what the patient would want. Similarly, the care team that sees the patient in a more vulnerable state may also question the clinical utility of such interventions. Bearing witness to this phenomenon can accumulate morale damage.
Aligning Perspectives
These misalignments are not due to negligence but often to differing perceptions amongst all involved as to what constitutes a “good outcome.” A powerful tool that can be wielded by all providers, a well-done goals-of-care conversation, which is not dichotomized as nothing versus everything, can translate the patient’s values into clinical goals that make sense for all involved. Ideally this is performed by any provider but serious limitations involving time and training leverages the Palliative Care team to do it “right” before hard lines have been drawn between the parties involved. The clarity of such a conversation often reveals that patients, caregivers, surrogates, and providers often share similar goals as their medical reality changes. In fact, these conversations may reveal that patients are less invested in an aggressive approach assumed by the clinical team.
Being utilized early and frequently can often help delineate what success is for all parties, patients, and care team alike. By emphasizing a comprehensive approach to suffering and values, every intervention starts to serve the person and as a result the team. Clinical decision making is no longer considered within the landscape of stark medical reductionism. Positions are explored, and underlying these positions are common interests that allow compromise while moving forward as a team.
Take for example an 81-year-old female with end-stage COPD patient complicated by frailty, multiple comorbidities, and recidivism to the hospital. Currently she is obtunded on the medical floor after being admitted for COPD exacerbation. The decision to intubate is paramount for survival with extension of life. The ICU physician subsequently intubates the patient and treats the patient for COPD exacerbation. Though the patient has a long course, weaning occurs and she can be liberated from mechanical ventilation. Serious concerns arise by the ICU team as to what to do if the patient needs to be intubated again in the future. She maintains that she wants everything done and the clinical team worries that she may not survive or be easily weaned requiring a potential tracheostomy and feeding tube.
After a detailed goals of care discussion, it is revealed that the patient has a granddaughter that will graduate college in the next 2 months. The patient has raised her granddaughter since she was 3 years old after her daughter and son-in-law died in a motor vehicle collision. Worried about having her granddaughter aware of health issues and recent hospitalizations over the past 9 months causing her granddaughter to come back home to take care of her without being able to finish her college degree. Similarly, if she were to focus on comfort only, she feels that her granddaughter would come back home prematurely. As a result, she has dictated a close friend as her medical power of attorney and has requested that the medical team avoid updating her granddaughter. She also worries about funeral arrangements as she has a fixed income. Ultimately, she does not want to be a burden to her granddaughter. In addition, once a devout Catholic, she fell out of practice after her daughter died. When queried about this she states that she regrets not practicing anymore and has concerns about dying and what this means for her.
When discussing the concerns of the primary team to the patient, she decides that she will contact her granddaughter to discuss her current condition and worsening health as she has good insight into her limited time as she would not want a tracheostomy and has been optimized as best as possible on an outpatient basis. Resources are made available to her for funeral arrangements. The chaplain has another conversation with the patient and can pray with her for the first time in years. That said she still would like to still be intubated in case of another exacerbation to avoid death during the next two months. The palliative care team discusses this with the primary intensivist. The primary intensivist discusses options with the patient, and they agree it is reasonable to avoid compressions in the meantime and a time limited trial on mechanical ventilation if she were to be intubated again. As part of this discussion the patient asks if the palliative care team and intensivist help have this conversation with her granddaughter as she truly values her independence.
The example above exemplifies the need to have a value-based conversation that addresses causes of suffering. Often recognizing values and suffering is the only way intractable positions reveal underlying issues that all can understand. Studies have shown that during end of life patients may prioritize quality of life and comfort focusing on practical and existential suffering that clinicians may not consider.5 In the case presented, the primary intensivist felt that the patient’s position was reasonable and a new understanding occurred because of interests that were uncovered from the goals-of care conversation.
Palliating the Providers
There is often hesitance among healthcare providers to recognize their own needs. Patient well-being often has primacy, which can leave little room for the suffering that healthcare can create for those on the team. Palliative care can address these challenges by fostering a culture of alignment and shared purpose. When goals are clarified and treatments align with those goals, clinicians feel less compelled to engage in interventions they perceive as ineffective or harmful because the treatments often align with common interests.
In many ways, palliative care can palliate the providers as much as the patient. When a team sees their work making a meaningful impact congruent with the patients’ goals, it can reframe prior misgivings. That may change as medical conditions change. Palliative care is not about giving up or doing less, it is about doing what matters most. For patients, this means prioritizing quality of life and personal values. For clinicians, it means aligning their efforts with those values and reducing the cognitive and emotional dissonance that arises from situations that cause moral distress. Supporting the team through palliative care enhances their capacity to thrive, ensuring the longevity of compassionate healthcare.
1. Henrich NJ, Dodek PM, Alden L, Keenan SP, Reynolds S, Rodney P. Causes of moral distress in the intensive care unit: A qualitative study. J Crit Care. 2016;35:57-62. doi:10.1016/j.jcrc.2016.04.033
2. Whitehead PB, Herbertson RK, Hamric AB, Epstein EG, Fisher JM. Moral distress among healthcare professionals: report of an institution-wide survey. J Nurs Scholarsh Off Publ Sigma Theta Tau Int Honor Soc Nurs. 2015;47(2):117-125. doi:10.1111/jnu.12115
3. Hamric AB, Blackhall LJ. Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration, moral distress, and ethical climate*: Crit Care Med. 2007;35(2):422-429. doi:10.1097/01.CCM.0000254722.50608.2D
4. Bernat JL. Medical futility: definition, determination, and disputes in critical care. Neurocrit Care. 2005;2(2):198-205. doi:10.1385/NCC:2:2:198
5. Steinhauser KE. Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. JAMA. 2000;284(19):2476. doi:10.1001/jama.284.19.2476
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