Helping Children and Families Cope with Serious Illness, Loss, and End-of-Life

I had a fantastic conversation this week with two social workers from the Pediatric Oncology team in a Bay Area hospital.

When a child is diagnosed with a serious illness, a myriad of medical, physical, financial, psychological, and social issues are suddenly thrust on a family. While doctors and nurses are busy at work with medical treatments, these medical social workers stand by to field the psycho-social concerns of patients and their families.

Due to PR concerns, both women have asked that their names and the name of their hospital remain anonymous, so they are identified here simply by the initials “K” and “J.” “K” has been with the Pedi-Oncology team for over 15 years. “J” has been on the team for 10 years, and her work is split between oncology and the hospital’s Pediatric Hematology section.

Dana: Could you give an overview of your roles in the pediatric oncology unit?

K: We’re both trained as social workers and licensed in the state of California as clinical social workers and the focus here in the healthcare setting is on medical social work. So, it’s looking at patients and families at the intersection of receiving medical services and the whole universe of experience that comes in at that point in life.

Dana: Are you typically with patients from the beginning to help explain this process and answer their questions?

K: [As an example] we had a new diagnosis today of a young boy, and the family’s dealing with the initial crisis of a serious diagnosis. I usually say to families “We’re in this boat with you on this voyage.” For a diagnosis of leukemia in a teenager the treatment is usually three years or longer, so that’s a chunk of time for a young person and for a family, and it’s life-changing for a teenager and for a family and extended family and community. So we’re with them along the way from the very beginning, and hopefully the outcome is positive, and a cure is achieved, and people go on their way. But, we’re still following them over the course of their adolescence and into their young adulthood … working with them through recovery and young adulthood, [working with them] in the event there are complications [later in life]. And we’re working through end-of-life, and providing supportive care after end-of-life.

Dana: What kind of work do you do with young adults?

J: The medical system is bifurcated between pediatric care and adult care. Some of the characteristics of pediatric care are [things like] very proactive monitoring of what a patient might need, hand-holding with the family … a lot of help with setting up appointments for tests. [In pediatrics] the nurse case-manager and the doctor — and the law, frankly — is looking over your shoulder, and if the family system can’t make those events happen, the law is stepping in to make sure it happens. Once you’re 18 years old, however, you’re on your own. It’s up to you to get yourself to the doctor.

Plus, in the medical system, you transfer to a different care provider in the adult world, and this is bumpy. To have to change doctors and to go into a setting where the specialists aren’t as available and don’t monitor your care and the nurse case-managers don’t have the same role. So, we need to prepare kids. It’s very much in the dialogue of the medical community across a lot of diagnoses to help kids at that juncture.

I’ve been working with some of the doctors here who are putting together a program to have meetings and materials, and working on having more hired support staff for those young adults who have been touched by either chronic illness or devastating acute illness. To have supports as they transition over to adult care.

And, we have some young adults who end up coming back! You make relationships, and it doesn’t always just go away.

K: That’s not at all uncommon. Many of us who work in pediatrics … say “When I get cancer as an adult, I’d sort of like to come to pediatric oncology, thank you very much! Because of the level of resource and support — it’s very family-centered, there’s usually more psycho-social support — it’s just a friendlier environment.

Dana: Are there a lot of elements of pediatric care that you think should be or could be incorporated into adult care?

K: I think oncology social work is a very defined discipline in medical settings across the country. So, it’s uncommon if you’re a cancer patient as an adult not to be able to connect with a social worker … It’s not that it doesn’t happen in adult settings, it’s just that I don’t think the resources are as generous. There’s a greater sympathy and sensitivity to [a child’s] serious illness, and there are also these legal mandates, where you must have social work services, mental health services —

J: It evaporates in the adult setting.

The other thing — and I’ll speak from my chronic illness population — some of the pediatric illnesses that we also see in the clinic, that aren’t oncology, used to be childhood illnesses because they died. But now with improved care, kids live. But there aren’t providers in clinic settings in the adult system, because it has historically been a childhood illness … The resources end up being in the broader community, rather than in the medical setting.

K: I think a lot of people don’t realize that survivorship for children [diagnosed] with cancer has vastly improved within the last 20 years. So really, I think the figures are upwards of 75% across cancer diagnoses; those kids are potentially long-term survivors. But a lot of those kids are going to grow into adulthood and have special needs, some deficits, some medical issues. So they’re definitely frequent fliers in the healthcare setting.

And, that’s still one out of four kids who will not survive a diagnosis like this, so that is not uncommon for what we’re dealing with — families that are facing the prospective loss of a child.

Dana: What is your role in helping families who are facing the loss of a child?

J: It’s important to maintain hope. And that is definitely an important part of any conversation or support. So our role is to continue to provide resource and support and counseling and emotional support services and assistance to people — both the children and the parents — as they navigate that territory (for example, a recurrence, lack of treatment, complications, special school services). [We connect them] with things to make life not only fun, but to help with whatever development is still possible in the child’s life while they’re still alive, enriching activities and resources. And I think it has a lot to do with being there for people through the journey and through those difficult passages as well. Right down to helping with resources for funeral and adjustment of family members, and timely provision of practical help, step by step (for example, stress disability for parents, help them accept a hospice) … We help to interpret the family to the team, or our medical team to the family, so that we can work with different styles [of communication].

K: For most families who are facing a prospective loss of a child or a young person, or a child or a young person is facing potential end-of-life, it is uniquely devastating. It’s very different than, say, last week, I went to visit my mother in law who’s in her late 80s and she has early onset dementia. She’s had a long life. She’s been sick in the hospital … That can be a sad time for a family, beginning to say goodbye to an elderly person. It is alien and hugely devastating for families to lose a child or a young adult. It’s just not seen as the natural scheme of life. Families typically will fight tooth and nail to give their child every opportunity for life, and kids and young adults are organized around life and living and they usually don’t throw in the towel. They are willing to put up with a lot for the glimmer of hope and continuance of life. You see a lot of bravery and a lot of heroism in that fight and in that struggle. And you also see great inspiration with young people who do ultimately surrender and think “I’m done with this battle. I’m ready to move on and pass the portal from this life.” But it’s not an easy journey; it’s an agonizing journey for most families.

J: And the touching area where children often know what is happening and protect their parents. They’ll go along with the parents’ style of fact-finding or reality-testing in conversation —

K: That’s a huge dynamic. Love is great in many families, and where that love is expressed is often family members wanting to protect each other. And sometimes the parent is afraid that the child will be threatened by the truth, and the child is afraid of their parents’ pain, so it’s very delicate and complicated. It really isn’t the healthcare providers’ role to decide the best way to approach that. It’s a process of listening very carefully and exercising great respect and there’s a lot of pressure in the medical system for the doctors to take action, to cure, to fix it. There’s a lot of anxiety on the side of the medical team when a child’s life is threatened.

J: EVERYBODY has feelings.

K: I think there’s a climate of helplessness, [a feeling] of “We need to do something, we need to do something,” when in fact sometimes what’s being done is what needs to be done. There’s no way to save people the pain and grief of a loss or a prospective loss.

Dana: Does it become your role as social workers, if it’s difficult for the medical providers, to help families face the truth and face the issues that they aren’t addressing?

K: We more bear witness and provide presence. I think families find their own truth in their own time. I don’t feel like it’s my job to [push them].

J: No, it’s not … If you want to let someone have hope you can’t say, “Remember this possible reality that doesn’t have hope in it.” And sometimes — because we work so often in problem-solving through a couple of dynamics, we often know people in a fuller, different way because of our professional training as social workers. We study people in their environment … The doctors are about CURE. There’s a different emphasis. We can bring other things to the conversation. We can illuminate either the doctor’s side of the conversation for the parents, or the parents’ side, open it into a broader kind of context and increase understanding on both sides. Helping a parent, helping a family without pushing, simply including thoughtful problem-solving that includes something getting more difficult, the health deteriorating, etc.

K: There’s a lot of value in working with a team in multidisciplinary capacities. The physicians we work with are very seasoned and very sensitized to the emotional issues that kids and families are going through, so they’re not focused wholly on the biology.

Dana: So you don’t see that the doctors are completely set on looking at it from a medical point of view? I think that’s a lot of people’s experience, but maybe it’s less true of pediatrics?

K: I haven’t worked really extensively in the adult setting; I’ve been more of a consumer in the adult setting, and I would say it’s vastly different.

Dana: Maybe more sensitivity training is involved in pediatric training?

K: You wouldn’t last very long as a pediatric oncologist unless you had sensitivity to family dynamics, because you’re working extensively with parents who are crushed by their child’s illness, and brothers and sisters. You’re not dealing just with the child, you’re dealing every day extensively with the families. It’s very much a family-centered approach. Not that adult care wouldn’t be, but not nearly to the degree that’s true in pediatrics.

I think the theme of hope is really elemental whether you’re in pediatrics or adult care. Maybe it sounds cheesy, but I don’t think our families ever give up hope, and I think if there’s an effort to rob them of that it’s brutal and unkind and unnecessary. And not healing. You may not be able to cure, but you can still work towards a healing.

Dana: Do you think that there is an effort to rob families of that hope?

J: I think that’s universal for everyone not to EVER rob the hope.

K: But I think the doctors do feel a strong sense of pressure, because they have to be honest. They have to tell a parent, “This is not a curable disease.” But, even in saying that, that information can be delivered in such a way that hope is still maintained: We can hope for a miracle, we can hope for extended life, we can hope for your children to remain comfortable, we can hope for quality of life. And that’s pretty central. Supporting families through very difficult times.

Dana: I get a sense that it’s a little bit harder to address the social issues here than, for example, in a setting like George Mark Children’s House or a hospice. Do you ever feel restricted being in the medical setting dealing with the psychological and social issues of the illness that kids are facing, or dealing with facing the end-of-life?

K: I don’t think it’s harder to talk about. I think it’s more difficult to BE in a hospital than it is to be in a home-like setting like a George Mark setting or at home. It’s very stressful; our families are sharing rooms with other families or other patients. The treatment itself in this kind of setting is kind of difficult to bear.

Dana: Do you mean from a comfort standpoint? The space is more sterile, etc?

K: Yes, very much so.

Dana: Is there anything else you’d like to share with SevenPonds readers that I haven’t mentioned?

K: I think it’s sacred work, and I think we’re really lucky to be able to practice what we practice, and to be on a team [like we have]. I think you’ll find in hospice settings or palliative care or other medical specialties working with seriously-ill kids or adults that the team aspect is really critical. It’s very daunting work — It’s harder to be the patient; it’s hard to be the family; it’s not like we have the hardest job! We certainly don’t, and we also see many gifts, really, and a lot of beauty and grace. We see some of the best of life and some of the toughest and most painful. It’s really work that’s best done in the company of humans.

J: We have such a fabulous team — we are so in it together, and everybody cares tremendously and shares that feeling of preciousness for the kids and what they’re going through.

K: There’s a lot of warmth and a lot of heart … and, I shouldn’t forget to mention the brain: There was a nurse here years ago, a very esteemed pedi-oncology nurse who said, “Sometimes I think people forget I have to have a brain to do this work.” But it’s certainly not JUST brain work at all, and I don’t think the doctors would get very far if they JUST used their brains, either.

Are you referring to brain versus heart?

K: Yes.

I think a lot of people forget that in social work. They think it’s just sensitivity.

J: Yes. The wheels [in the brain] have to be turning a lot of the time!

Dana: Thank you both so much for taking the time to talk with me. You raised some really interesting issues, and I’m happy for the chance to add your experiences to the conversation with our readers.

I had never considered the difficulties of transitioning from pediatric to adult care before this conversation. What did you learn from reading the interview?

Photo by Doriana S

