Social Aspects of Care

Collaborative Communication
Collaborative communication uses clear speech and mutual respect and compassion to establish a common goal, understand different perspectives, and manage intrapersonal (within ourselves) and interpersonal (within relationship) processes.

Barriers to Effective Communication
Medical trainees currently learn to communicate in the healthcare setting through a process of trial and error, and by observation of role models. Role modeling may be one of the most significant methods of forming professional character [201-207]. However, the current “hidden curriculum” disproportionately rewards hard data collection and downplays the need for effective communication[208-217].

Medical educators have long noted the loss of empathy related to current medical education methods and role models[218-223]. Attempts have been made to measure empathy and to reinforce it in medical school education[224-226]. Unfortunately, a large national survey published in 2003 indicates that medical school faculty themselves are in need of communication skills training[58], and there have been no documented improvements in the area of health care communication over the past fifteen years. Medical students report the amount and quality of end of life training to be low[58, 227], and it is unclear if these curricula prepare future physicians for coping with death[145].

In response, the American Academy of Pediatrics (AAP) recently issued a policy addressing the importance of communicating empathy and the establishment of an effective therapeutic relationship[228].

Developing Consensus between the Medical Team and the Family
All members of the medical team should meet prior to meeting with the family to reach an agreement regarding recommendations for redirection of care. One spokesperson (usually the attending physician of record) should be established to maintain continuity of communication.

Imparting Difficult Information
Building a therapeutic relationship and establishing good communication between the medical team and the family is paramount. Several studies have shown that the attitudes and actions of hospital staff members have a profound and lasting effect on parents’ experience surrounding the loss of their child[102, 121]. Multiple tools and guidelines have been developed to guide communication strategies[229-233] including the SPIKES protocol which includes:

1. Setting up the interview
2. Assessing the patient’s perceptions
3. Obtaining the patient’s invitation
4. Giving knowledge and information to the patient
5. Addressing the patient’s emotions with empathic responses
6. Strategy and summary[234]

When talking with the family regarding an end of life diagnosis the following phrases and ideas may be utilized as a “communication toolbox.” It is well established that the use of a protocol for breaking bad news may improve the experience[83].

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  • Plan ahead—Determine who should attend the family meeting. The immediate members of the healthcare team should be present. Other possible stakeholders include consulting physicians, chaplaincy, social work, child life, a family centered care specialist, and family advocacy services.
  • Meet in a quiet, private place
  • Refer to the baby by name
  • Ask what the parents know about their baby’s condition and assess their understanding[235].
  • Ask permission to give more information about the baby—This might include a question such as “would it be alright with you if I tell you more information about your child?” Such a statement can signify respect for the family, and build further rapport between them and the medical team.
  • Briefly recap the baby’s clinical course—Be careful not to say the patient is “doing better,” is “stable” or “good” at this time or in daily conversation[15].
  • Provide a warning shot— Tell the family that the news you have to give them is not good, or not what you wanted it to be, for example: “The results of the test are back, and I am afraid that the news is not good.”
  • Pause—Give the family a moment to prepare themselves for what you have to say.
  • State the bad news simply and speak directly— Keep the message concise and use lay language. Expect to repeat the message several times as the shock of the information you are conveying may interfere with the family member hearing what you have to say. Do not use euphemisms for disease or death. For example, say “he is dying or is dead” rather than “he passed away.”
  • Be honest.
  • Wait quietly—Periods of silence allow the family to process information more effectively. Silence also conveys respect and empathy, and that the medical team is there to support them. Wait for receptive body language from the family before proceeding. Continuing to talk beforehand may be interpreted as unfeeling. One study showed that an increased proportion of time during which the family spoke and the physician listened was associated with increased satisfaction[236]. The family will not hear the next piece of information until they are ready.
  • Convey empathy—Parents recognize and appreciate sincerity, compassion, tenderness and emotional availability from the physician and team members conveying bad news. Statements such as “I wish (the test, the surgery, the diagnosis) was different” rather than “I’m sorry” convey sincerity and help to forge a closer connection with the family. Legitimize the appropriateness and normalcy of their reaction: “anyone receiving this news would feel devastated” or “it is completely expected to be very distressed by this kind of news.” Making note of one’s own emotional response may help to guide the conversation.
  • Ask parents what their thoughts are and how they are coping with the information presented—Asking parents these questions allows the practitioner to view the baby’s death from the parents’ perspective and to better meet the parents’ needs. Explore more about what is underneath emotions expressed by using statements such as “tell me what is the scariest or most difficult part for you,” or “tell me more about that….”
  • Acknowledge hope—It is a normal grief reaction for people to voice their desire or belief in a miracle. Wait patiently, and then ask about other hopes. The family may require additional time to restructure their hopes, which may include hopes for a comfortable death, hopes for family to be close by, or hopes to die at home. Other hopes described include lying in bed together, or a trip outdoors[124]. If possible, these hopes may then be translated into goals for the medical team. If no other hopes are forthcoming, it is best to set a time for another meeting in the near future to ask the question again.
  • Address fears—Affirming parental concerns and asking about seemingly forbidden topics can help to alleviate fear and anxiety. Use open statements. For example, “Many parents feel as though they are causing their child’s death by stopping the ventilator. Are you worried about this?”
  • Answer questions—Some families will ask questions at this point. If they do, answer their questions in a straightforward manner. Some families will not ask questions. If they do not, saying “I don’t know if you want to ask any questions. If you do, I can answer them; if not, you may ask them later.” Answers to questions will likely have to be repeated at a later time as strong emotions are known to impair subsequent recall of information. Greater opportunity for families to speak is associated with higher satisfaction.
  • Review the goals—Tell the family about two goals of medicine. The first is to add time to life. The second is to add quality to life. If medical interventions do neither, it is no longer appropriate to continue those interventions.
  • Offer choices, if possible—Do not offer parents a choice between technological support and comfort care. Parents may feel that if they do not choose technological support they are agents of the baby’s death. Inform the parents that there is nothing curative to offer their child. State that the current therapy can continue as it is, but that the outcome will not change. Transparency about extraordinary options (such as a tracheostomy, gastrostomy, and home ventilation for a patient who is neurologically devastated) is advised, and the family should be informed as to why such options are not recommended. The choices offered should center on the family’s previously expressed hopes and wishes for their child. Improved holding, cuddling, breastfeeding, and kangaroo care with the provision of comfort care should be emphasized[15].
  • Give a recommendation—A unified team approach and clear recommendation to enhance the baby’s comfort, rather than trying to unsuccessfully change a disease process is appropriate and may relieve parents of the some of the burden of decision making in the end-of-life context[237]. The words “withdrawal of treatment,” “withdrawal of care” or “there is nothing more we can do” should also be avoided. The parents may accept or reject the recommendation. In either case, assure the family that you will continue to provide care for their baby and support the family, and that any symptoms of discomfort will be aggressively managed. If the family asks for a second opinion, their request should be honored.
  • Make a plan—State simply what will happen next in terms of the baby’s care. Let the family know that the medical team will continue to provide the best medical care for the infant, and that any symptoms of discomfort will be aggressively managed. Use of the word “we” reflects shared decision-making and support for the family. For example, “I think that we are making the most reasonable decision, given the options”[238].
  • Let the family know they will not be abandoned—At the end of the meeting, tell the family exactly when you plan to meet with them again. Decision making and consensus in the NICU is rarely a one-time event. Studies have shown that it is a progression, often of multiple conversations and meetings. The family who experiences a normal grief reaction will not be able to hear and process everything that was conveyed immediately after receiving distressing news. Assure families that both they and the baby will not be abandoned, the baby will be comfortable and will not suffer, and that the family’s decisions are supported. These assurances should be made multiple times[106, 146, 239-241].
  • Focus on compassion—The fundamental question is how best to love this patient. A parent’s decision to discontinue life support is an extraordinary act of love and courage. Speaking in terms of loving the baby also focuses the conversation on parenting and gives the family permission to focus on end-of-life issues without feeling as if they are abandoning their role as the patient’s mother or father. Do not attempt to relate yourself to another person’s emotions. For example, don’t say “I can’t imagine how you feel.” Rather, acknowledge the family’s emotion with simple observational statements such as “I can see that you are very upset” or “I hear how angry you are.”
  • Guide parents through the process—Families need to be educated and prepared for the dying process. Knowledge about what can be expected, including color changes and reflexive gasping, decreases parental anxiety. Emphasize that support for the baby and the family will always be provided. The unpredictability of the time to death from the time of removal of support should also be addressed. The adequacy of information given to parents before their child’s death predicts intensity of long-term grief[242].
  • Debrief—Discuss how the meeting went with other members of the medical team, including any problems or miscommunications that occurred and how better to constructively resolve these issues during future meetings[83].

Additional Family Meeting Guidance
One study found that only one half of families of ICU patients sufficiently understood information about patients’ diagnoses, prognoses, or treatments after a family conference[243]. Protocols for family meetings may improve communication of difficult information. Further guidance for family meetings is provided in the algorithm below[83]:

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Special Considerations for Transport
If a family desires their child with a life-limiting condition to be transported to a tertiary care center, a conversation should take place between the transport team and the family concerning the possibility of the infant’s death during transport, and the option of delivering palliative care during the transport process[244]. If no further treatment option exists at the accepting hospital, the patient should undergo “back transport” to the birth hospital to be near the mother and family at the time of death. During the process of back-transport, the same conversations should take place[15].

Reasons Families May Demand Apparently Inappropriate Medical Care

  • Failure to comprehend prognosis—Studies have shown that it is quite common for families to misunderstand the information provided to them by physicians[243]. Often this occurs because of extreme stress and anxiety, or a misunderstanding of medical terminology or the concepts presented. One way to assess what the family understands is to ask them to repeat back in their own words what was explained during the meeting.
  • Religious beliefs about end-of-life decisions—Families may have idiosyncratic ideas about the teachings of their religion and may not realize that their religion accepts the discontinuation of life support in cases of medical futility. Involving their religious leader in discussions may or may not improve this situation. If theirs is a deeply held belief and is supported by their culture, it is likely that efforts to change their beliefs will fail. However, the family may reconsider their beliefs in time after witnessing their child’s suffering.
  • Religious belief in miracles (unresponsive to further questioning regarding hopes by the medical team)
  • Lack of confidence in medical diagnosis or prognosis
  • Belief that more can be done
  • Secondary gain or solution to life crisis
  • Disagreement about seriousness of outcome
  • Different (but equally valid) value set than medical team—People do have different values. Some people believe that the life of every child, even one with severe or profound disabilities, has great value and should be saved. The question is not whether or not we would make the same choice, but is the choice a valid and acceptable one, given that we live in a diverse and tolerant society[235].

Disagreement Between the Medical Team and the Family
The adoption of a curious posture, avoidance of assigning blame, a realization that the family may not want to have a certain effect on the medical team, and an open discussion about the impact of specific words and behaviors may diffuse disagreement between caregivers. If disagreement persists between the family and medical team despite multiple conversations, a bioethics consultation should be considered. Further discussion of this subject may be found under the same subject heading in Ethical and Legal Aspects of Care.