Comfort care in medicine describes the shift in a person’s medical care from the aim to extend life to that of focusing on comfort through intensive symptom management and optimizing quality of remaining time as they near death. Comfort care planning is commonly done in the hospital and is highly individualized, based on patient and caregiver needs as well as clinician experience. Yet, there are few practical discussions in the literature around the issues clinicians must consider when creating a comfort care plan.1 Here, we outline the thought process that goes into creating this plan as a patient transitions to comfort care in the hospital (Figure 1).
Care of a person at the end of life.
COMMUNICATING CLEARLY ABOUT COMFORT CARE
The first step in creating a comfort care plan is to communicate clearly about what comfort care is and how a patient’s care may change if they decide to transition to a comfort-focused approach. The clinical team must ensure that the patient or surrogate decision-maker understands the new information presented and agrees with the change in care plan. We encourage holding a family meeting that allows the medical team to clearly present their findings and options for care moving forward, and the patient and loved ones to discuss their goals of care in response to this information. For a hospitalized patient, this communication includes seeking input from the interdisciplinary team, including nurses, physical and occupational therapists, speech therapists, pharmacists, and other clinicians.
Depending on the patient’s and family’s previous understanding, responses to this news can vary from shock to complete acceptance. We recommend starting conversations as early as possible when concerns arise, offering to pause, and respecting their pace as clinically able. Creating this plan in true consensus can often take several meetings and repeated conversations to safeguard the trust and confidence of all involved. When available, consultation with palliative medicine or ethics should be considered for conflict mitigation and in cases in which communication challenges arise.2
By its nature, comfort care is the medical care that someone will receive as they near death. Communication can be difficult due to cultural taboos around discussing death.3 Fear is a common reaction for both clinical teams and patients and families. It is our experience that trust can be built by early, frequent, and truthful communication even when bad news is being delivered.4 Research supports this, and guidelines recommend offering a path of comfort care as an option when patients are at high risk of death or severely impaired functional recovery.5
Patients and caregivers may misinterpret comfort care to refer simply to symptom-focused interventions at any stage of life, rather than as a dramatic shift in the focus of care from disease modification to holistic care until natural death.6,7 We recommend explicitly discussing, in a respectful fashion, that if the patient and family elect comfort care, the medical plan shifts to supporting the patient as they die. Emphasize that the patient is dying despite previous interventions, and that the comfort care medical plan will focus on supporting the body as it follows its natural dying process.
Alternatively, patients and caregivers may misinterpret comfort care to refer to the intentional hastening of death. It is imperative for teams to communicate clearly that comfort care is not intended to accelerate death. When dosed appropriately, comfort care medications have been shown not to hasten death, but rather to provide comfort and symptom relief to a person during their natural dying process.8
The plan must also be coherent: for instance, a patient who is having difficulty swallowing and wants to continue eating for pleasure must have a discussion around limitations of ventilatory support. In clinical scenarios where a patient’s behaviors or choices are discordant with their stated goals, it is appropriate to recommend a time trial of a particular intervention unlikely to be helpful, or to recommend that a patient forgo it entirely.
For instance, when there is a goal of eating for pleasure in the setting of known aspiration, advance conversations about intubation and ventilation could recommend against these interventions or emphasize a time-limited trial of them if the patient still wishes to consider them. This is a necessarily delicate discussion, balancing clinician expertise with respect for the patient and family’s preferences about level of involvement in decision-making, while also ensuring clarity and consensus in the plan. Table 1 includes phrases we suggest clinicians use to elicit this clarity during discussions and to ensure respect for persons during this sensitive time. (For readers interested in reviewing communication aids in greater depth, we recommend the Ariadne Labs Serious Illness Conversation Guide.9)
Phrases to consider when communicating a comfort care plan
CREATING A PLAN
Comfort care plans are often stepwise and always individualized. They should naturally evolve as the patient’s clinical status changes.
When creating a comfort care plan, clinicians often think first of specialized, symptom-directed medications. However, the pyramid-shaped figure depicting the care a person needs at the end of life (Figure 1) is designed to remind teams that the bulk of this care remains similar to the care many patients need: regular caregiving such as assistance with activities of daily living and administration of medications. A smaller component of comfort care involves decisions about continuing or discontinuing current medications and devices. Specialty medications for symptom control typically comprise the smallest portion of care.
Below, and in Table 2 and Table 3,10–12 we provide guidance on creating medical orders for comfort care in the hospital that communicate the plan effectively and support care delivery from all interdisciplinary team members.
Considerations for a comfort care order set: Communication, regular care, and patient monitoring
Considerations for a comfort care order set: Devices, procedures, and medications
Regular care
The basis of care for patients shifting their focus to comfort care remains the same: caring for the dignity of the person and attending to their basic bodily needs. This includes providing a safe location, ensuring cleanliness and appropriate feeding, administering medications, and assisting with other activities of daily living as their body changes.
The major questions we ask about plans of regular care are who will provide it and where it will be provided. These are questions to ask of both patients and potential posthospital caregivers, and it is essential to ensure both have realistic views. Effective planning may involve the realization that family—perhaps an equally elderly spouse—cannot provide the intense physical care required during this time and families may need to grieve this reality.13 Medical staff should continue to provide this care to the patient while they remain in the hospital. Inpatient orders should reflect regular nurse rounding, room ambiance, cleanliness and toileting, wound care, and movement for comfort according to patient needs.
Patient monitoring
As goals shift away from extending life and toward providing comfort during the dying process, monitoring should likewise shift away from measures such as laboratory tests, results, and vital signs and toward assessments of the patient’s symptoms and comfort. Emphasizing the things that will be done for a patient before discussing the things that we recommend stopping helps patients and caregivers understand that the transition to comfort care is not an abandonment of care. This change in monitoring should be discussed with patients, their families, and the interdisciplinary team, as all involved parties may have uncertainty about the implications of a symptom-assessment approach to patient monitoring.
While numbers such as blood pressure, blood glucose, and pulse oximetry can be helpful at certain points in care, they become less helpful as patients near dying. Just as other components of the care plan transition in a stepwise fashion, these data points can transition to more intensive monitoring of the symptoms experienced by a patient. We coach families that we can monitor facial expression, grimacing, patterns of breathing, and urine output to ensure patients remain comfortable and to identify anticipated changes and progression through the dying process. Medical staff should continue to round on the patient to monitor and assess for comfort at regular intervals as clinically appropriate.
Feeding
Feeding is not only an act of sustaining life but also an act of expressing love. We explicitly discuss the current and future eating-related changes we expect during the dying process. We recommend always providing food by mouth, which can range from full meals to small tastes of a favorite food for pleasure.14
Feeding is so ingrained as a cultural care method that attentive caregivers can feel neglectful if they can no longer persuade a patient to eat. Coaching families about alternative methods to express love and care, such as gentle massage and storytelling, can help to ease this grief.
If a patient is already receiving advanced methods of nutritional support such as intravenous fluids or total parenteral nutrition at the time they decide to transition to comfort care, these interventions must also be considered when determining the comfort care plan.14 Are these nutritional supports still providing comfort and helping to reach the patient’s goals? Does their provision limit other components of the care plan, such as eligibility for hospice care? Feeding plans must be acknowledged as specific medical interventions, with their risks and benefits changing as the patient’s clinical status changes.
Devices and procedures
Modern medicine often results in patients receiving remarkably high levels of specialized care throughout their life. This includes pacemakers and defibrillators, dialysis, ventilatory support, and frequent blood product transfusions.15,16 Patients who transition to comfort care may have relied on these advanced support methods for days to decades, and discussions about the plan of care moving forward should include explanations of concrete signs and symptoms that indicate these advanced supports are no longer helping patients meet goals, as well as a tentative plan of care to discontinue them once that point is reached.
We have frequently found disconnects between the medical teams’ and patients’ or caregivers’ perceptions of whether these supports are helping the patient remain comfortable. These conversations may need to be repeated as the patient’s clinical status changes. The additional proposition of a time trial can help patients and caregivers assess if a support or device is truly helping them reach their goal. For instance, a time trial could be proposed as follows:
I hear that you feel dialysis is still helping your mom. I think that we should assess how she feels after dialysis tomorrow. If she feels stronger and more awake, this would be a sign to me that dialysis is helping, and we can make a plan that includes continuing it for a time. But if she continues to seem weaker or sleepier, or if her blood pressure is too low to complete dialysis, this is a sign that her body is dying despite this support, and we should then consider what it would look like to stop dialysis.
Medications
Medications are often the first aspect of comfort care to come to clinicians’ minds. We suggest a 2-step process to assess medications in comfort care that can be repeated as the clinical course of a patient’s dying process progresses.
The first step is to review current medications and assess if they are currently adding comfort.17 Many medications, such as inhalers and diuretics, are inherently palliative (noncurative) in intent and may offer significant comfort while a patient is awake but no longer contribute to comfort once a patient enters the active dying process.
The second step is to consider any additional medications that may be added to improve a patient’s symptom management as they transition to actively dying. If a patient is already taking a symptom-focused medication such as an opioid, dosing in comfort care should start at the patient’s current dose and be escalated as needed.
CONCLUSION
Providing comfort care to patients is both an honor and an academically challenging endeavor. In providing this care, we recall the words of Edward Livingston Trudeau, who wrote that in practicing medicine, our goal is “To cure sometimes, to relieve often, to comfort always.”18
DISCLOSURES
The authors report no relevant financial relationships which, in the context of their contributions, could be perceived as a potential conflict of interest.
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