Topic: 9. Case Study Questions
Family Assignment
This week’s family assignment is The Garcia Family.
Living and Dying a Good Death, Saying Hello and Good-Bye
You are a nursing student in your final clinical placement. I am your preceptor, a clinical nurse specialist (CNS) on the palliative care team in a children’s hospital. You asked for this placement as a final year nursing student because you have come across a number of situations during your student experiences where you wished you knew how to talk and be with a patient and his or her family when the patient was dying. You realize that all nurses, from novice to expert and in all areas of nursing practice, need to develop skills in the area of death and dying. Please acquaint yourself with the Garcia family genogram in Figure 10-4. Consider what it would be like if you were the student working with this family.
Figure 10-4. Garcia family Program.
We have received a new consult to meet with Emma and her parents, Eduardo and Karina Garcia. We learn that Emma is 7 days old and is a beautiful little baby with a perfect little face, big dark eyes, and lots of dark hair. Emma is on a ventilator because she has severe congenital muscular dystrophy and is unable to breathe on her own. Babies with severe disease, like Emma, have a very limited life expectancy, typically only a few weeks. Her severe muscle weakness means she is not able to breathe on her own for any length of time. We have been asked to meet with Emma and her family because they have decided, in consultation with their health care team, to withdraw ventilator support. As part of the palliative care team, we have been invited to assist Eduardo and Karina in deciding how, when, and where the withdrawal might occur.
Before meeting with this family for the first time, we realize how important it is to prepare ourselves. We know that we need to pause for a moment and consider how we might begin this conversation with Eduardo and Karina. We also want to ensure that we have in place whatever we might need to facilitate this first meeting.
We make arrangements to meet with Eduardo and Karina in a quiet, private room where we will not be interrupted. Pagers are turned off and other staff are covering for us so that we will have time to sit with the parents and really listen to what they have to say. Given that there will be several challenging things to discuss, we invite the neonatal intensive care unit (NICU) social worker, who already has a relationship with the family, to join us for this meeting.
Before meeting the family we spend some time talking about different ways to begin the conversation with the parents. There are as many ways to start this conversation as there are clinicians. This is the beginning of what we hope will be a therapeutic relationship during one of the most difficult times a family can experience. Eduardo and Karina need to know who we are. It is often hard for parents to keep track of health care professionals—who we are, what we do, and how we can be helpful. This is especially true in highly emotionally charged situations, so typically we start with brief introductions. Sometimes, rather than starting the conversation by saying why we are here, it is helpful to gain an understanding of why the parents think we are meeting and then continue from there.
We start the meeting by each introducing ourselves. Then one of us says, “Tell us your understanding of why we are meeting today.” To facilitate our connection with this family, we also ask Eduardo and Karina to tell us about Emma—not her medical condition but what they have noticed about her or experienced in their relationship with her as parents. In answer to our query, one of the things Karina tells us is that she thinks Emma has Eduardo’s eyes. Eduardo has noticed that she follows Karina with her eyes, and he says, “She really knows her mom.”
We learn after talking with both sets of grandparents (mostly by telephone because Eduardo’s family is in Mexico where he and Karina met and Karina’s parents live across the country), the health care team, and their priest, that Karina and Eduardo have indeed decided that the most loving thing they can do as parents is to withdraw Emma’s ventilator and allow natural death. We encourage them to discuss their concerns, fears, and hopes for the time they have now with Emma. There is much silence and tears as the parents try to put into words all the thoughts swirling in their heads. They tell us that their focus is on having Emma experience as much of normal newborn life as she can. Also, they want to touch her and care for her. They want her to spend time with her 4-year-old sister, Sara, and 6-year-old brother, Markus; to be in her car seat; to have both her mom and dad bathe her, cuddle her, and change her diaper; to be baptized; and most of all to see the sun. We learn that it was the middle of the night when Emma was born, then immediately transferred from her small community to our tertiary urban hospital 3 hours away, so she had seen the moon but not the sun. Eduardo is a forestry worker and the family loves to be outdoors. They cannot believe that one of their children will never spend any time outdoors. Neither Karina nor Eduardo had been able to hold Emma before she was whisked away. Karina has held her in the NICU, but Eduardo has been reluctant because of all the tubes. He is feeling sad that her pervasive muscle weakness means she cannot grab onto his finger the way Sara and Markus did as babies, and he is searching to find another way to connect with Emma. Both parents express worry about how to help Sara and Markus understand what is happening in a way that does not frighten them. Although both Karina and Eduardo are committed to their decision, they are afraid that Emma may suffer when the ventilator is withdrawn. They are worried about watching her struggle for breath. The parents ask us for a week to have these experiences with Emma; they also want time for additional family members to visit and to plan for withdrawal of the ventilator.
Following our meeting with Eduardo and Karina, we meet with the involved NICU staff members, who are quite concerned with the proposal that we wait a week to discontinue the ventilator. This is not the way it usually happens, and they worry that the family will only become more attached to Emma, finding it harder and harder to let her go, or that something will change in Emma’s health status that may lead to an earlier death than what the parents expect. We provide further explanation and facilitate a meeting between the parents and the NICU staff. At the meeting, NICU staff members are able to express their concerns, and the family is able to respond, as well as talk about their wishes. Hearing each other’s fears and hopes is helpful, and there is now agreement and support for the parents’ request. Eduardo and Karina understand that it is possible something could happen unexpectedly with Emma and, although everything possible will be done to ensure that she is comfortable, the staff would not provide CPR if her heart stopped.
Emma and her parents move into one of the private family rooms in the NICU. Karina’s parents, Elaine and Gordon, who came to care for Sara and Markus in the family home, bring them to stay in a nearby hotel. This proximity enables them to visit often and to get to know the newest member of their family. Prior to their first visit, we spend time talking with Eduardo and Karina about how to prepare the siblings for seeing Emma, as well as explaining similarities and differences in how Sara and Markus may understand what is happening. Another member of the team, a child life therapist, spends time with Sara and Markus individually and together to assess and support their understanding and coping with Emma’s illness. Eduardo and Karina join some of the discussions and have some of their own time with the child life therapist. They learn how young children come to understand serious illness and death and that Sara and Markus will likely have questions about Emma for many years. They are happy about the picture books and other resources on how to support their children over time.
During the week, even in the midst of the technology that is still needed to keep Emma breathing, Eduardo, Karina, Elaine, Gordon, Sara, and Markus do all the things that families with newborns usually do. The family has the opportunity to say hello and good-bye to their new family member all at the same time. Eduardo holds Emma for the first time, and they take many, many pictures and videos. They give Emma her first haircut, and each saves a tiny lock of hair tied with a ribbon. Sara and Markus each create a memory box with drawings, the locks of hair, Emma’s handprints and footprints, and copies of the photos. They also help the child life therapist make molds of Emma’s hands and feet and of their own. Eduardo’s parents arrive from Mexico, and several close family members and friends come to meet Emma and witness her baptism in the hospital chapel. The list of hopes and dreams for this time is ticked off. Eduardo and Karina also use this time to contact a funeral home in their home community and make arrangements with their priest for her wake and funeral.
One day we take Emma, her parents, her siblings, and her grandparents outside to the hospital’s play garden, where it is beautifully clear and sunny with a gentle breeze blowing. Hospital security has closed the garden to other families and staff so it is intimate and peaceful. Emma is able to feel the sun on her face for the first time. The child life therapist is there to support Sara and Markus. They both seem to enjoy this family outing: running over to see Emma, giving her a kiss, and then heading off to explore the sandbox and the swings before coming back again for a hug from their parents. Eduardo and Karina ask if we think that Sara and Markus really don’t understand the situation and that is why they keep running off to play. The child life therapist reassures them that this is a typical way for children to cope and essentially they are just taking in what they can handle at their own pace. The child life therapist continues to follow the children’s lead in supporting whatever they want to do and wherever they want to be in the garden. A nurse from the NICU stays close to Emma to assist her in breathing while her parents and grandparents are holding her. Everyone relaxes and shares stories about Karina’s pregnancy, the labor and delivery, and the things they have learned about Emma the past few days. We take more family pictures and videos to send to the rest of the extended family that night. To our surprise, the parents feel so comfortable in the garden that they ask if we can discontinue the ventilator in the garden. We set about making this request happen.
Eduardo, Karina, and Elaine meet with us, the neonatologist, the NICU CNS, and the NICU social worker; we explain how we will keep Emma comfortable when the ventilator is withdrawn. The family is reassured to learn that there are medications that will ensure that Emma does not struggle for breath and that we will not allow her to suffer. Eduardo asks what it will be like when we take the ventilator away. We are able to help them understand that we do not know how long Emma will be able to breathe without assistance, but it could be minutes to hours; her breathing will slow, become irregular, and then stop. Her color will change and she will feel cool. Eduardo and Karina decide that they would like to be by themselves with Emma when she dies. Sara and Markus will stay at the hotel with their grandparents and then may come back to see Emma before she is taken to the funeral home.
Both parents seem to be coping fairly well with the situation, with Eduardo taking on the role of the strong one and Karina appearing more fragile. On the day of Emma’s death, however, we are surprised at the reversal of roles, as Eduardo looks disheveled and distressed whereas Karina has done her hair and makeup; she’s wearing a special outfit and seems in control. We had hoped for sun, but somehow the weather seems more in keeping with the mood. You comment to her parents that Emma has seen the moon and the sun, and now she is experiencing a true West Coast day—foggy and gloomy. Emma is given some medications so that she will not experience any pain or distress and is settled with her parents in a secluded corner of the garden. The priest performs last rites. The nurse removes all the tape and then the endotracheal tube while Emma remains peaceful in her parents’ arms. We give the family private space to be together but, along with other members of the team (the priest, the NICU social worker, and the NICU nurse with additional medications ready in case Emma experiences any distress), are available in the play garden if needed.
The play garden is on a busy street, and we are concerned that the level of traffic noise might be disturbing to the family. Our concerns increase when the siren starts at the nearby fire hall and the fire truck roars past; Emma’s dad simply walks over to the fence and lifts her up to see her first fire truck. Emma and her parents walk the paths of the garden. Although there is still bustle and noise around them, it is clear that Emma and her family are in their own little world. Although they had opportunities to do normal family things over the past week, this is the first time Emma and her parents experience each other without the interference of machines, tubes, wires, or other people.
Emma lives for another 2 hours. After she dies, her parents continue to hold her for another hour. Both sets of grandparents return with Sara and Markus to say good-bye to Emma. Although the children were both told what Emma would look and feel like after she died, Markus in particular has many questions about whether she is hungry, why she is cold, and if she is just sleeping. Karina responds gently to all of their questions to help them understand what has happened. When the family is ready, Sara and Markus spend some time with the child life therapist while a senior nurse, Patrick, partners with you to help Karina and Eduardo prepare Emma’s body. Patrick asks the parents if they have any special rituals they would like to do, and he explains about what needs to be done to meet the hospital rules. Everyone works together and though it is sad there is also a peacefulness as Karina and Eduardo talk about how happy they are to have done things the way they wanted to. They thank you and Patrick and say how grateful they are that the staff made it possible for Emma to die in peace in such a beautiful setting; Karina and Eduardo say that they will never forget what the staff did. With one last kiss on Emma’s forehead, they leave for home with the rest of their family.
Patrick assists you in completing all the charting and necessary paperwork related to Emma’s death. Because Eduardo and Karina decided against having an autopsy, Emma does not need to go to the hospital morgue. Patrick calls the funeral home and accompanies you as you carry Emma’s body in a special softly colored and patterned bag to meet the funeral home director at the staff entrance to the hospital. You return to the unit and spend some time talking with Patrick and me. We make sure that you have a way home and a friend available to spend the evening with you. I also contact your clinical coordinator to let her know about the day’s events to make sure that you have some ongoing support from the faculty. A few days later I invite you to attend a special debriefing session with NICU staff.
Because the funeral takes place 3 hours away, you are unable to attend. I suggest that you send a note to the family and offer to review it if needed (see Box 10-8 in text).
One Month Later
That was not the end of our relationship with this family. We make a home visit a month after Emma’s death, where we learn about the funeral. Karina and Eduardo remark that they were very happy when two of their favorite NICU nurses came to Emma’s funeral. They tell us about how moved they were when they received notes from you and some of the other nurses, as well as a card from NICU staff. They tell us that it helps them to know she touched the hearts of those who looked after her. We discuss how Karina and Eduardo are managing as a couple and as parents. Eduardo is back at work; Sara and Markus are back at preschool and school. Both sets of grandparents have gone home. At this point we draw an ecomap (Fig. 10-5) of the family’s community connections, discuss their experiences of grief, and work together to map out avenues of support available locally. We let Karina and Eduardo know that they will receive a letter with an appointment to see a geneticist in about 6 months. Because there was a genetic component to Emma’s diagnosis, they may want to explore genetic testing and understand any possible risks for future pregnancies. A follow-up visit with the NICU neonatologist, CNS, and social worker will be coordinated to occur on the same day to respond to any questions the parents may have about Emma’s illness and death, as well as to see how the family is coping. We invite Karina and Eduardo to bring Sara and Markus then to meet with the child life therapist.
Figure 10-5. Garcia family ecomap.
We also let them know that the NICU has a formal program where, with the parents’ permission, staff nurses are supported to contact families at regular intervals in the first year after the death and then send a plant on the 1-year anniversary. Karina and Eduardo express their appreciation for such a program and say they can only imagine how hard it will be on the anniversary of Emma’s death; to know that the NICU staff who looked after her will be thinking of them gives them great comfort.
Based on this week’s family assignment case study answer the following case study discussion questions:
When palliative care began for Emma? When did it change to end-of-life care?
What are the six qualities of palliative care and how this team met each of those qualities?
How did the NICU staff and care team helped the Garcia family through Emma’s dying and death. Is there anything else that could have been done to assist this famicholy with their grieving process?
