Terminally Ill Pediatric Patients and the Grieving Therapist

• The Dying Child
• The Dying Child’s Family
• The Challenges of Working with Dying Children
• Postscript

When asked about the favorite aspect of my (dream) job, I could talk for hours. I feel passionate about working in a pediatric hospital setting with chronically ill children and their families. Each day brings new challenges. I enjoy inpatient and outpatient sessions, parent consultations, family work, collaboration, and advocating for this population any chance I get.  

On the contrary, when asked about the least favorite aspect of my job, my response is far less glowing and enthusiastic. I work with children from various departments within the medical center, including oncology, cardiology, trauma, and solid organ transplant. It is inevitable that I encounter children who are terminally ill. I will never understand why children die. Experiencing the death of a child is the most painful part of my job, and it will never make sense to me although logically, I know this happens. On the other hand, I feel honored to be a small part of the most vulnerable time in a family’s life, and to walk alongside them in their journey of grief and loss. Helping a family and their child during end-of-life care is arduous work. It has been impossible for me to not be deeply impacted working in this arena.

I will never forget the first patient with whom I worked that received a terminal diagnosis. I was an intern completing my graduate work. Because I speak Spanish, I was privileged” to work with more challenging cases. I remember sobbing to my mentor at the time, not understanding how a child could die. In response, my mentor neither chastised nor criticized me. She agreed with me and mourned with me. She supported me through that experience and reminds me even to this day that we are human. That support has stuck with me as I continue to mourn the deaths of children with whom I work.

When I was first asked to write a post related to working with terminally ill children and their families, I hesitated, perhaps not wanting to open old wounds and visit the pain that comes with this kind of work. But as I’ve experienced more child deaths over the years, I wanted to share my thoughts and feelings and am humbled to share my stories.

The Dying Child

The dying child has a variety of emotional, physical, and spiritual needs. They have questions and often want information about what is happening to them. The child who is terminal often feels unsafe and understandably anxious. One word I’ve frequently heard, particularly from the parent, is “brave.” In my experience, many parents of terminally ill children find inner strength in the strength of their own children. I remember one child who was aware of her prognosis comforting her parents, reassuring them that she would be “okay.” She arose each morning and worked hard to remain connected with her parents, family, and friends. I also try to remember, even in the face of their strength, that these children are scared. As I have discussed with many families, fear and bravery can, and often do co-exist. For me, bravery is moving forward even in the face of fear.

To Tell or Not to Tell

A glaring ethical question is whether a child should be told they are terminally ill and that they will die. In my experience, many medical providers and members of the psychosocial team believe a child should be informed of the severity of the diagnosis; whereas parents often do not wish for their child to know. Many parents believe children will “give up” if they are aware of the prognosis. To the one, children often know something is very different or not right. They may be confused and desire open communication to understand what is happening within their own bodies. It is my job to provide caregivers with this information and connect them to the Child Life department if they would like guidance regarding how to tell their child. It is not my job, however, to advise them on what to do or impose my own beliefs. The decision is ultimately up to the parents.   

The Dying Child’s Family

The families with whom I’ve worked represent a wide range of cultures, faiths, religions, abilities, and beliefs. It has been imperative for me to work with them through a very focused lens of acceptance and understanding of end-of-life issues so that I can be as useful as possible. When learning about a family’s culture, it has been important to know and appreciate the family’s beliefs about the afterlife as this has guided me when discussing their child. Faith can be an important coping skill and protective factor when a family receives news of a terminal diagnosis for their child. However, challenges may arise because of a family’s faith. I have met with Christian caregivers who struggle with the balance of faith and science. Many worry that preparing for end-of-life care, such as transitioning to hospice, considering a DNR, or planning the funeral indicates they are not “good Christians.” Connecting families to spiritual care has been crucial when the family’s faith is important to them.

Families are often faced with challenging decisions regarding end-of-life care. Many parents process these decisions with the child’s therapist. Some parents worry that focusing on the child’s quality of life and reducing seemingly futile treatments will be perceived as “giving up.” I have often worked with caregivers who struggle with the continuation of treatments that are painful, and sometimes even agonizing, for their child. While they want what is best for their child, the decision to extend that child’s life can be tortuous.

Complex and anticipatory grief can make the adjustment to a terminal diagnosis that much more difficult. It is challenging for caregivers to be fully present while still grieving the impending loss of their child. In addition, siblings are often overlooked as a necessity for the dying child’s care. I recall the family of a dying child with whom I facilitated sibling play therapy. My goals during sessions were to connect with each child and help them connect to each other. During those sessions, the child with the terminal illness often felt ill and lethargic. The sibling first requested that the patient play with her in many ways. However, as sessions progressed, the sibling learned to allow her sister to lead. For example, instead of two chefs working at a restaurant, the sibling was the chef who served the tired patron a meal. The ability for families and siblings to find strength to cope always amazes me.

Hope vs. Denial

It is not uncommon for me to receive proclamations from the child’s medical teams that the family is in denial about their child’s diagnosis. I will never forget sitting down with a particular mother to discuss her child and family. She said, “I know what the team thinks. They think I don’t understand what is happening. I understand. I am just choosing to have hope. Hope in a higher power. I know my child’s doctors do not have the last say. I have hope that God will heal my child.” Hope is not denial. Hope is an adaptive and positive coping skill that bolsters a child and family during outstanding hardship.

The Challenges of Working with Dying Children

I was fortunate to be surrounded by deeply empathetic people during my internship, when I first experienced the death of a child patient. Since that time, I have met many medical providers who have been able to build an emotional tolerance for this kind of work out of necessity to care for their patients. I have always been thankful for their skill at addressing the physical and medical needs of these children and their families.

As a therapist, however, my role is to attend to the emotional needs of the family — their strengths and fears along with, of course, their presenting concerns. I have learned the importance of allowing space for all feelings, including my own, when a child’s death is imminent or has occurred. I used to believe I was not able to grieve the loss of a patient. My grief meant nothing compared to the limitless grief of the family, friends, community, and bedside staff. However, I quickly and poignantly came to see the disingenuousness of this belief. I have learned that the only way I can be fully present for the child and their family is by remaining firmly anchored in my own humanity and vulnerability.

I have certainly heard words like compassion fatigue, secondary trauma, contagious emotions, and empathy trauma bandied about, and how any of these experiences can lead to burnout. One extreme challenge I’ve experienced when meeting with a terminally ill child and/or their parents has been the pressure of meeting with a healthier patient immediately afterward. I will never forget receiving news a patient with whom I had worked for years died two minutes before a session with another patient. I still question whether I was able to offer unconditionally positive regard to that second patient as I struggled under the weight of what had happened moments before. Shifting those emotional gears was a challenge.

Over this and related experiences, I have had to learn ways of grieving to avoid burnout. Showing my own humanity and vulnerability within the boundaries of safe relationships and work friendships has made me a better therapist and afforded me an outlet for my own emotions. I remember working with a chronically ill child for over a year who received a terminal diagnosis. As her illness progressed, I transitioned to working with her parents. I learned to never schedule a session with another family or patient directly following these interventions. After these emotionally dense and intense sessions, I would schedule five minutes to cry. I would shut my office door and have a few minutes to allow myself to experience these heavy feelings and an emotional release. I have learned that by allowing myself to grieve, experience, and understand my own humanity, I have become a more empathic person. This has, in turn, allowed me to continue to work with this population and alongside grieving families.

Guilt and Perspective

There are several challenges and, not surprisingly for me, blessings when working with this population. One glaring emotion I often experience is guilt. When leaving the hospital for a vacation or holiday, I must inform the families of newly admitted patients that I will be gone for a few days. Many families say, “Have fun!” or “Merry Christmas!” The typical “you too” does not suffice in this scenario. The extreme guilt I felt as a young therapist was overwhelming. Then, with two healthy pregnancies and subsequent maternity leaves, and now, with two healthy children, I am often surprised by waves of guilt. Over the years, these waves have decreased in size and duration. I know I have a role to fill to support these patients and families, which will be impossible if I continue to focus on the guilt I feel.

On the other hand, I feel deeply grateful to work with these patients and families. Their strength and steadfastness are astounding. In addition, this job fills me with immense amounts of perspective. I recall a mother saying to me, “I don’t know how you do this — choose to come to work with these sick kids every day.” I replied, “I don’t know how you do this — show up for your family every day with vulnerability, strength, and support.”?Small arguments at home or my childrens’ typical tantrums seem so manageable when compared to the hardships families I work with endure. This often leads me back to guilt. It has taken me years to focus on the perspective and honor I feel instead of allowing guilt to overcome me. I realize this helps me be a better therapist for the children and families with whom I work.  

Countertransference

 Another challenge I’ve encountered when working with this population is countertransference. Loss prompts memories of past losses, with each new one potentially amplifying the pain of those that have come before. This has been extremely challenging for me when working with dying children, especially when I think of my own children. I recall working with a family whose child was nearing the end of her life. The parents and family wanted to make new memories by visiting Disney World, Six Flags, Disney on Ice, and birthday parties. I found myself planning with the parents during parent consultations ways to motivate their child to want to attend these events.

The child wanted none of these outings, instead choosing to remain home and stay close to her parents and siblings. In looking back on that episode, embarrassingly, I wondered if the child was exhibiting depressive symptoms. I naively believed that it would be to everyone’s benefit if she did those things with her family. During a subsequent parent consultation, I suddenly realized I was pushing my own agenda. I mentioned this to parents and that this was not what their dying child wanted. In that moment, I realized the potential power and influence of countertransference when working with dying children and their families. Therapy and supervision are key in instances such as that one.

Boundaries and Self-Care

I’ve always valued the importance and recognized the challenges of maintaining boundaries when working with this population. Our mission at Children’s Health is “making life better for children,” and I genuinely strive for this every day. However, I have encountered specific ethical dilemmas necessitating clear boundary setting. These have included coming in on a weekend or evening when a child is not doing well or nearing the end of their life, wanting to buy gifts or necessities for families who are struggling, attending funerals, crying in front of families, or sharing information with others outside of work. While buying gifts and sharing information outside of work lie within strict ethical parameters, attending funerals, coming to work when not scheduled, and crying with families lie more in the ethics shadows. Attending patient funerals is a particularly challenging ethical domain. Many providers simply do not attend funerals, while just as many others do. It has been important for me to determine if harm might befall the family if I attended their child's funeral.

Showing emotions to family members is also a sticky issue. Many therapists have been told “don’t cry in front of families!” I have openly teared up with several families.

Therapist as Advocate

Over the years, I have discovered the importance of advocacy. If the patient expresses certain wishes, such as knowing details of their medical/health status or having friends nearby, I share these with the family and medical team when appropriate and after discussing this with the child. My role as advocate has also included helping the caregivers understand their child’s desires. As with the example of the client and her family mentioned above, I helped parents see their child’s perspective and, in turn, meet her needs during the end of her life. We were able to focus on the goal of togetherness and provide her with feelings of safety and connection the way she wanted. This was a difficult shift to focus not only on what the family wants but want the child desired. Legacy building through memory making is yet another form of advocacy, which can be built into the (play) therapy.  

Postscript

Working with children who are dying has been emotionally strenuous yet deeply gratifying work for me. Staying present in my feelings while being fully present for the child and family has been particularly challenging. Utilizing rituals to remember and honor a child has been a helpful tool. Our hospital hosts a memorial service each year for employees to grieve patients who have died. Others plant a seed or add a bead to a bracelet for each child who passes. I choose to keep mementos given to me by patients and consider how each child impacted my life and changed me as a clinician. Moving forward is one of the hardest challenges for me as both a clinician and person. I have learned the absolute importance of surrounding myself with others who understand my experiences working with this population.  

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