It’s a decision that you never thought you would have to make. A decision that most people cannot imagine. The unfortunate reality of childhood cancer is that not all children will survive.
When we were told there was no treatment options left for Shawn and that the tumour in his brain would eventually take his life, we were faced with the decision of whether he would spend his last days in the hospital, in a hospice centre or at home.
There are many things to consider when choosing the place where your child will die. Here are a few that we thought about when making our decision for our family.
Although the seemingly cold and sterile environment of a hospital may not be ideal for a child’s last days, it does offer the most hands on help when it comes to care. Hospital staff within a palliative care wing are highly trained and can help carry the ‘burden’ of such things as bathing, pain relief, feeding and any medical care such as suctioning and bed turning. If a child’s quality of life is reliant on various medical equipment, hospital staff offer the highest level of expertise on the role this equipment will play in making your child as comfortable as possible and how this may change as they progress.
During your child’s stay, on their last day and even afterwards, the hospital will provide a support system for all the members of your family. For siblings this may mean immediate access to grief counseling geared specifically towards children.
However, not all local hospitals are experienced at palliative care for children. If you feel that your child’s needs will be better met at a children’s hospital, location may be a factor. Travelling long distances to your nearest children’s hospital can be taxing on all family members.
A hospice is a medical facility that looks and feels more like home. Often with bright colours, couches and a comfortable bed, it is a middle of the road option for families who are uncertain of taking on the responsibility of full time care at home but do not want a hospital environment either. A hospice home offers a multi-disciplinary team of physicians, nurses, hospice aides, social workers, bereavement counselors and volunteers who work together to address the physical, social, emotional and spiritual needs of each patient and their family. A hospice also offers a comfortable place for visitors to come and go but is an environment that can help control the amount of visitors and the time frame in which they visit.
Although highly trained and exceptional in what they do, not all hospice homes are equal and not all have experience with children. When investigating this option ensure you talk to the hospice home coordinator about your child’s specific needs including medical ones that they may not be familiar with. Ask about their experience with pediatric palliative care and ask if you can tour the facility and speak to some of the staff who could be part of your child’s care team.
Your nearest children’s hospital will be able to recommend a hospice that is suitable for your particular situation and location.
The third option of having your child die at home is a decision that should not be taken lightly as it can be physically and emotionally draining for all family members.
Consider the following when thinking of home:
- Do you feel you have enough information, coaching and expertise to care for your child at home? Consider their special needs such as feeding tubes, suction, pain medication, etc.
- Do you have access to professional caregivers in your area and are you comfortable allowing them into your home?
- Will local professional caregivers be available should you need them?
- How does your child feel about it? How do your other children feel?
- Do you and your partner / spouse agree? One parent cannot handle this alone.
- Will you be able to manage visitors? As well-meaning as they are, being at home may seem like an open invitation to friends and family members.
Our family chose to have Shawn spend his last days at home and we have never regretted the decision. Home was always his favourite place to be and we wanted him to feel that loving, safe environment in his last days. Although it was certainly more work than we had originally thought as we took on the roles of nurse, doctor, therapist and advocate, we felt confident in our ability to be his primary caregivers. We did welcome visits from a multitude of experts through local community groups into our home for added support.
When considering the above options it’s important that you look inward to your own wants and needs as well as your child’s and those of their siblings. Choosing where your child dies is a very personal decision for every member of your family. Speak to your child’s medical team to ensure you have all the information you need in order to make the decision that is best for everyone.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ (http://www.amazon.ca/Sippy-Cup-Chemo-Familys-Childhood/dp/0991943902)hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Megan’s Walk (http://www.meaganswalk.com/); benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.