This is a blog that I wish I didn’t have to write. Unfortunately it’s also the reality that too many parents face. When our son, Shawn, was dying I wish I was more informed about the details in those last few months and that is why I won’t shy away from them now. Emotions aside, here are some points to consider as your child’s life comes to an end.
Hospital, Hospice or Home
There are many things to consider when choosing the place where your child will die. Hospitals offer the most expertise when it comes to palliative care and help carry the ‘burden’ of ensuring that your child’s needs are met. Hospice care is a middle of the road option, allowing for a home type of environment, access for more visits from family and friends and around the clock nursing care.
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, 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?
- 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 have never regretted it. Home was always his favourite place to be and we wanted him to feel that loving, safe environment in his last days. My husband and I felt confident in our ability to be his primary caregivers but welcomed a community of experts into our home for added support.
Managing Pain and Immobility
If you have chosen to remain in the hospital or the hospice option, the caregivers at these facilities, with your help, will manage many of your child’s needs. If you have chosen to have your child die at home, you will be responsible for managing their pain medication and other medical needs as they progress. Keep track of when pain meds are given and follow the schedule as laid out by your child’s physician. Missing a dose or giving too much can affect your child’s quality of life.
As your child progresses towards death much of their mobility will diminish. Over the course of a month Shawn went from running around the back yard to being completely immobilized. With immobility comes the worry over pressure points and bed sores. As painful as it may be for the patient, moving your child into different positions and offering massage is imperative to pain management. As they lose their ability to go to the bathroom, skin sensitivity from diapers can become a concern as well. In those last few weeks, Shawn lost his ability to swallow and close his eyes. We suctioned his saliva regularly with a machine delivered to our home and applied ointment to his eyes to keep them moist. You are their parent but, at home, you will become their nurse as well.
Communicating With Your Child
Along with their mobility, your child’s ability to verbally communicate will also diminish. There are things you can do to prolong that communication for as long as possible. Create cards with pictures or words and have them nod or point to what they need. Starting this early, before the loss of their verbal skills, will help them move to this method of communication when necessary. Squeezing fingers for yes and no is also something that works well for younger children. Follow this link for more tips on communicating with your child.
Your Child’s Nutritional Needs
As Shawn’s impending death drew closer, his interest in food waned and even when he did show interest we worried that he would aspirate into his lungs as he struggled to take it in. His care team gently suggested that we stop offering him anything to eat or drink. They explained that losing interest in food is part of the death process and Shawn’s body was telling him that he no longer needed it. This was by far the hardest thing for us to understand. At the heart of providing the basic needs in life is the provision of sustenance and my heart couldn’t comprehend not feeding my child. In the end, with the okay from his medical team, we inserted a feeding tube and continued to feed him small amounts until his last day.
Plan the Funeral Before
As difficult as it may seem to plan a funeral while your child is alive, you may find it ‘easier’ than trying to pull all the pieces together after they’ve passed. For Shawn, I asked a close friend to make the initial call to the funeral home as I just couldn’t. Once that initial contact was made, I was able to concentrate on the details. Older children who are aware of their impending death may want to be part of the planning and have specific requests in regards to their ‘celebration of life’.
The Timeline of Death
In May of 2007 we were told that Shawn’s tumour had regrown and that there was nothing more that could be done. Of course, we asked the question of how long. We were informed that Shawn would be gone by Christmas. As a family we sat down and made our 6 month plan. Who would stay home with Shawn? Who would work so we could continue to pay our bills? At what point would we all stay home together for those last few weeks? Decisions were made and we put the plan in place. In September an MRI showed that Shawn’s tumour had tripled in size and he had weeks left not the months that we had planned for. The point is that the timeline given is not an exact science and as much as you may want to, you can never truly plan. So take all the time that you can with your child.
We do know that there are physical signs present as the end of life approaches;
- Interest in being social with the outside world will decrease
- Sleep will increase and may be erratic
- Interest in eating and drinking will wane
- Mobility will lesson more and more
- The ability to communicate verbally will diminish and eventually disappear
- Disinterest in food and lack of mobility will lead to weigh loss
- Time spent being lucid will decrease
As Shawn’s death became imminent we would wake up every day wondering if today was the day. On a home visit with his physician she pointed out how he would take several breaths and then stop for what seemed to be a long time and then start breathing again. This was a sign, she said, that he would pass away in the next few days.
As death becomes imminent;
- Body temperature will decrease
- Blood pressure will lower
- The pulse will become irregular
- Periods of rapid breath followed by periods of no breathing at all will be noticeable
- Hands and feet will become blotchy
As that day approaches, be aware that other family members may want to be present at the moment of death. It’s important that you consider what you want, what your child would want and have an honest conversation with those around you about their expectations.
Considerations after Death
As much as we don’t want to talk about it there are a few things to be aware of when your child has passed away at home. I remember calling the funeral home just after 10pm that Monday night, telling them that Shawn had died and arranging for them to pick us up in the morning. The lovely gentlemen on the other line explained that the body goes through many changes after death and as much as we wanted to spend more time with Shawn, we may not want to witness these physical changes his body would undergo in the next few hours. We were grateful for his frankness as difficult as it was.
We also reached out to our primary doctor who arrived shortly after to witness and sign the death certificate. The hearse arrived closer to midnight and I cringed as it pulled into our driveway. Our wonderful neighbours had been very supportive but in a time when we wanted peace and quiet, this was like waving a flag that Shawn had died.
It’s hard to think of the details at such a horrible, emotional time. As someone who has gone through this though, I remember being shocked at some of these details and wishing that I had been more prepared for them. My hopes in sharing these points with you is that you can consider them as you make your child’s end of life plan and then spend more time doing what matters most; loving them.
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’ 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 Meagan’s Walk; benefiting 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.