Discussion
Key themes found in end-of-life (EOL) communication with families and caregivers include highlighting clinical deterioration, involvement in decision making, continuation of high-quality care after cessation of aggressive measures, tailoring to individuals, clarity, honesty, and use of techniques in delivery.2 Some of the techniques identified were pacing, staging, and repetition.3 Other techniques that can be beneficial include allowing for time to express one’s feelings, being comfortable with brief periods of silence, validating observations shared, among others. These themes were evident in the interactions that his health care team had with Mr. P and his daughter. With honesty and clarity, various members of the health care team repeatedly shared information regarding his clinical deterioration.
Family Influence
EOL decision-making roles within a family tend to originate from family interactional histories, familial roles as well as decision-making situations the family faces.4 The US medical and legal systems also recognize formal role assignments for surrogate decision makers.4 In the case of Mr. P, his advance directive (AD) identified his daughter as his surrogate decision maker. ADs are written statements made in advance by patients expressing their wishes and limitations for treatment as well as appointing surrogate decision makers when they become unable to decide for themselves in the future.5
During discussions about the goals for his care, Mr. P made his own medical decisions and elected to pursue a comfort-focused approach to care. His request for his health care team to reach out to his daughter was largely due to his need for assistance in explaining the complexity of his clinical condition to her and how hospice services would be helpful with his EOL care. Mr. P depended on his daughter to bring him to the hospital or to his doctors’ appointments, and she had been a major source of support for him and his wife. Contrary to the belief of some of his health care practitioners, Mr. P was not deferring his medical decisions to his daughter but rather allowing for her participation as his health care partner.
Communication between nurses and patients has been found to be challenging to both parties. Nurses express difficulties in areas that include supporting patients and families after they have had a difficult conversation with their physicians and responding to patients and family members’ emotions like anger.6 EOL care issues, such as family barriers to prognostic understanding, can interfere with psychosocial care.6 Families of patients approaching the EOL describe feeling mentally worn down and being unable to think straight, leading to feelings of being overwhelmed.7 They feel the need to be in a place where they can accept the content of difficult EOL conversations to be able to effectively engage.7
Studies have shown that family members of patients at the EOL experience stress, anxiety, fatigue and depression.8 Reactions that can be perceived as anger may not be so nor directed to the health care team. Questions raised regarding the accuracy of prognostication and treatment recommendations may not necessarily reflect concerns about the quality of care received but an exercise of advocacy in exploring other options on behalf of the patient. Allowing time for families to process the information received and react freely are necessary steps to facilitate reaching a place where they can acknowledge the information being relayed.