Being the doctor parent of a sick child: coping with challenges. By Dr Louise Stone
This article first appeared in MJA Insight in two parts in 2019:
https://insightplus.mja.com.au/2019/11/caring-for-a-chronically-ill-child-the-bigger-picture/
https://insightplus.mja.com.au/2019/7/on-being-a-doctor-parent-of-a-sick-child-challenges-and-practical-strategies/
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place”. Susan Sontag (1)
As doctors, we hold dual citizenship of these kingdoms professionally. However, when our child is significantly unwell, and requires prolonged or repeated hospital stays, our worlds collide. In these circumstances, there are deep and long-lasting challenges; not just to our children, but also to the way we see ourselves as parents and as doctors.
In this paper, I draw on my own lived experience as the parent of sick children, but also my conversations with other doctor-parents, including my colleagues in the GPDU community, to present some of the collective wisdom we have gained over many lonely and frightening days and nights in tertiary care. This is the first of two papers and focusses on the practical challenges involved. The second paper will explore strategies for managing psychosocial trauma experienced by the family. I’ve kept the comments general to preserve the anonymity of our children.
Professional challenges
There are advantages to being a doctor-parent. You feel comfortable in a hospital and tend not to be daunted by the environment, the technology and the personnel. You know who is who, and you can speak the dialects of tertiary care. However, being a doctor can also change the therapeutic relationship with the treating team. (2) It shouldn’t, but it does. Health professionals may assume you know more (or less) than you do. As a GP, I must confess I didn’t know what to say when a tertiary specialist began a sentence “as you would know from your understanding of the anti-leprous agents…” I needed to communicate that leprosy was an extremely rare presentation in Australian General Practice, and therefore I needed a clearer description of the proposed therapy.
Our questions can be perceived as challenges to the team, instead of the genuine questions they are. We are embarrassed by our inability to take information in or reason things out. We are surprised how good it feels when a patriarchal doctor makes a difficult decision for us when we obviously can’t. In the wake of serious illness, those decisions are often too much for us to bear, and their weight may need to transfer to the team. (3) Hospital policies are frustrating. If it takes four health professionals (nurse, resident, registrar, anaesthetist) to put in a drip, why, two days later, is the nurse suggesting she try and resite it? Why can we not go straight to the anaesthetist? In these circumstances, it is hard to retain good working relationships with everyone involved.
We struggle to be a “good” patient, and not be perceived as “difficult” because we know that being perceived as “difficult” impedes good care. (4) But we are just as frustrated and angry as the average patient, particularly when we know what good care can be. Having your own GP is critical here, so they can play “bad cop” and be the “difficult” doctor asking the difficult questions instead of you. Sometimes choosing the non-medical parent to ask the hard questions makes questioning easier.
If you do return to your professional role, it can be hard to make good decisions when the patient in front of you shares symptoms, disorders or other characteristics of your own child. It is completely appropriate to enlist the help of colleagues at this time, as it is often understandable that you cannot be as objective as you need to be. Recognising this risk is important, and collegiate support can help you decide whether to pass such patients on to a colleague or manage them mindfully yourself.
Coping
Everyone has an opinion on how well a parent “copes”. It can be part of the standard assessment of the family during paediatric visits, (5) so it is helpful to consider what “coping” actually means. It is highly confronting to be seen as someone who isn’t “coping”, should be “coping” more effectively, or is labelled as having “acopia”. I have summarised the stages of coping in box 1, but essentially, it is important not only to understand the situation and solve problems, but also to have emotional supports and strategies when problem solving is not helpful. (6)
Developmental challenges
Sick children have the same developmental needs as all children, but development may be slowed or arrested by illness. (7) Where possible, it is important to continue to offer them the same developmental challenges as their age peers. Hospital schools are part of this, but so is play. When you feel miserable and hopeless as a parent, it can help to imagine what you’d be doing with a well child at this age and do it. (see Box 1) For young children, this can challenging, but it can become more difficult to supply a child’s needs as they grow up.
Adolescence is a particularly difficult time for chronically ill children. (8) They need to decide how they will incorporate their own sick roles into their emerging identity. (9) Rites of passage can be particularly difficult as a doctor parent. When your immunosuppressed 17 year old decides to spend a gap year in South America, it can be terrifying to consider the infectious diseases risk. Sometimes the drug combinations are tricky, particularly for young women considering the oral contraceptive pill or LARCs. As a GP, it can be difficult to negotiate these issues. The team managing the primary illness may have little working knowledge of common drugs like oral contraception, travel vaccinations or even the effects of alcohol, and so it can be difficult to advise a young person appropriately. Even the most risk averse adolescent will challenge the paediatric team at this point. (10)
It is understandable that a paediatric team who have seen the young person through multiple medical crises may struggle to feel comfortable with risk taking, but that is the developmental challenge that young people face. As doctor parents, it is easy to feel “stuck in the middle” trying to harm minimise, while respecting an adolescent’s right to choose the course of their life. Adolescent medical units and transition teams are available and helpful, but form another team to manage, more appointments and more relationships to negotiate. Good parents may struggle with these transitions even in healthy young people, but parents of sick children do this while being observed and often judged for their parenting choices. (9) Phrases like “it’s time for a parentectomy” are not helpful when as a parent you are struggling hard to manage these transitions thoughtfully. It may be highly appropriate to allow a 15 year old to have a conversation with their GP on their own, but it may be less acceptable to send them into a renal transplant clinic without support.
Then there are the mental health concerns: eating disorders in diabetics, anxiety in young people with chronic illness, and so on. We know that the average Headspace unit or youth service is unlikely to manage this complexity. Seeking unemployment or disability support benefits is a deeply distressing experience for most people, but the adolescent with a disability often suffers significant shame seeking help. (11) Social workers and transition teams may help, but may also not be sufficiently well staffed to manage this effectively. Many services are unaffordable in the private sector, and the adult hospitals may not necessarily be able to meet the needs of young adults. (12)
Educational challenges
Chronically ill children have a hard time at school. (13, 14) No matter how good the school is, they experience, in the words of one of the kids in my medical community, a “dotted line” or “second hand” education. As parents, we find ourselves having to identify important gaps and deficiencies, and try to motivate our children to remedy them. The issues, however, are often around motivation and despair. One child of a doctor parent put it like this “I can keep up, or catch up, I don’t have the energy to do both”. As parents, it’s easy to feel you can never “get it right” with school teachers. They will fluctuate on whether you are too hard or too easy on the sick child. They may expect the child to “catch up” by talking with their friends. If they do this in class, they are being disruptive. If they do it in the playground it’s socially disruptive.
Siblings can be invaluable here if they’re older to help you and your sick child understand what is expected around assignments. Often particular words have particular meanings that vary across the disciplines. It can be difficult to decipher the “code”. At the same time, your child is coping with stepping in and out of their peer group, and may have significant social adjustment issues. It may be difficult for these children to participate in team sports, group projects, drama productions, or music groups because of unavoidable absences, and this is tough on the child and their peers.
Trauma is an inevitable part of a child’s hospitalisation, particularly if that hospitalisation is prolonged. Seeking support for yourself, your children and others close to you can help you gain strength to face the marathon of caring required when parenting a chronically ill child.
Practical challenges in managing a sick child as a doctor-parent
1. Always pack a pillow/ light quilt for the child. Your job is to hold on to the identity of the child as a person, not an organ system. So have markers of who they are: it’s much more comfortable. Polar fleece washes well and comes in bright colours and survives a hospital laundry. If you are staying a while, consider a roll up mattress topper and pillow for the parents. I don’t know why there is a premium on pillows in a hospital, but there is.
2. Make sure you’re up and dressed early. If you need to advocate for your child to the team (eg surgeons and their 6am rounds!!) you can’t do it dishevelled and in your PJs. Stand up and look them in the eye.
3. Let the paediatric registrars practice (non painful) exams with your child if you can. It normalises examinations for your child, and if you’re lucky the registrar may fill you in on what’s in the notes if you need it. It also lets your child practice talking to doctors and feeling a bit more expert.
4. Be exceptionally nice to nursing staff. A box of mixed tea is always welcome as a thank you. It means when something goes wrong, you have a relationship in place so it’s easier to go the front desk and fix things. I do appreciate nurses, they are woefully understaffed and generally deeply capable and compassionate, but if you’re a doctor, sometimes nurses can be a little hard to engage with.
5. Pack decent coffee and tea, snacks and fruit. Don’t forget Blu Tack or similar to hang up childrens’ drawings or messages
6. Don’t forget that children need to play. In the flurry of regimes and medical processes, it is easy to overlook that a child is still a child, but this is one area where it is easy for friends and family to help. Hospital libraries in children’s hospitals have age appropriate books on the hard stuff for you child and siblings, and will often deliver bookbags. LEGO can be washed in a pillow case. Sheets can be placed on the floor for play dough, finger painting, dolls houses (great for playing through what’s going on) and the like. When relatives ask what they can do, suggest craft materials, colour by numbers, card games, drawing materials, plenty of paper for visiting kids to make cards from, and so on. It is often too much to go shopping for these sort of supplies when you are overwhelmed with medical appointments.
7. If you can, alternate adults at the bedside. There is often a gendered layer to this. Men often get marginalised and the siblings can miss out on Mum and resent the sick child. Staff will often comment how “wonderful” dad is to stay but look slightly miffed that mum is going home. To mind the other children. Not to drink herself silly and gamble her life savings.
8. If you can, appoint an adult other than you to be available to the siblings. Your other children may not want to upset you by asking questions that worry them. And your friend/ relative may agree to be the liaison person with updates as well to save you going through things a million times. Authorise this person at school and in sporting groups, music groups and the like in case they need to act “in loco parentis”.
9. Get an excellent GP for your child. They can ask the hard questions of the team, so you don’t need to. Doctors can unfortunately get defensive when other doctors ask hard questions. And get your own GP and support outside of your child’s team. You need to be able to be strong in the team and vulnerable somewhere else.
10. Get a fitting so you can screw a drip stand to the pram. Wheeling a pram and a drip stand is impossible.
11. Choose hospital clothing cautiously. It is impossible to feed a drip through most types of toddler pyjamas. Large neck openings are essential.
12. Forgive yourself. Accidents happen, illnesses happen, things happen for no reason. Some things aren’t fixable. You can’t immunise your child against this sort of trauma you can only do your best.
13. Pets matter: involve them as much as possible
The tasks of coping(6)
Appraisal: understanding the situation and your own resources so you can mobilise help and support for your child
Problem solving: the ability to break down problems into achievable goals, and then to implement strategies to manage them
Emotion focussed coping: the ability to seek and receive emotional support from others and/or to implement strategies to manage the emotional load of parenting a sick child.
Meaning focussed coping: implementing strategies to survive day to day. This may involve the following elements
· Positive events that provide a distraction from everyday cares: “breathers” (eg clown doctors, toys, days out of hospital)
· Positive events that enhance self-esteem and feelings of effectiveness: “sustainers” (eg hospital schooling, craft activities)
· Positive events in which people felt connected and cared about: “restorers” (eg organizing visitors, constructing memory books with photographs, connecting to classmates using technology when in hospital)
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