Family Centered Care

You may find that with children, active treatment of the disease continues, even with the knowledge that there may not be a cure. The course of illness in children can be very hard to predict. Depending on the illness trajectory, the amount of involvement from a home care or palliative care perspective may be limited at times.

Rural health care professionals are often uncomfortable caring for a child who is dying, as this is not something that happens regularly. These feelings need to be acknowledged, and accessing the resources available to you is important. It is crucial to work closely with the specialty teams at the health care facility where the child has received treatment. There should also be a pediatric palliative care team that is accessible to you, no matter where you are in Canada. These pediatric palliative care teams can help provide support such as phone or telehealth consultation for the family and health care providers, and assist in care planning and symptom management in order to help keep children in their home communities.

Family-centred care

Family-centred care is an important approach for all members of the health care team to follow when caring for the dying child and the family. A child dying at home creates a challenging situation that affects parents, siblings and caregivers.

With a young child, the parents are usually very involved in his or her physical care. Children usually prefer to have the assistance of parents because they are familiar. However, parental involvement affects what a nurse or health care assistant might do. Discuss with the family effective techniques that the health care team could use to approach their child. Also involve the family in deciding what services are needed and how they should be implemented.

Keep in mind that the needs of the child can be lost in efforts to treat the illness, and it is important to remind everyone about what is best for the child. Children usually have a keen understanding of their illness and that things are not going well. Open and honest communication is crucial. Having an outlet for the child to express his or her emotions, feelings and fears may be helpful. The developmental stage of the child is an important consideration here (see age appropriate assessment below).

During this difficult time, parents are trying to maintain various roles and may need extra support. They may feel pulled in many directions with work, caring for other children, and trying to maintain normalcy. They may also be facing financial hardship. Alerting the family to the federal government’s compassionate care benefit may help ease the financial burden a child’s illness may bring. You may also want to investigate if there are other local or provincial resources that can assist the family.

Siblings are another key part of the family you must consider when a child is dying. The day-to-day life of siblings can suffer because of a child's illness; they may have strong feelings about the child dying in the home. Siblings may feel anger and jealousy, and can exhibit behavioural problems. They may also feel forgotten or unimportant as the ill child receives so much of their parents’ energy and time.

Being aware of siblings’ feelings is vital for health care professionals and requires a time commitment on their part. Ensuring that siblings have someone to talk to and are aware of what is happening in the home is crucial. Normalizing siblings’ lives as much as possible should be a goal of the health care team and family. However, at times, this may not be possible, and the help of extended family and friends will be necessary to care for siblings.

Families may have questions about siblings being present when the child is dying or sibling attendance and involvement at the funeral. Families should let siblings have the option of how much they would like to be a part of what is happening. Some children want to be very involved, and others do not. Developing creative ways to involve siblings that respect their individual personalities is often the best approach. During the illness of the child and during bereavement, siblings may find support groups helpful if they are available in your area.

Symptom management

As with an adult dying at home, management and anticipation of a child’s physical symptoms are crucial. Therefore, a health care team must have medications available before symptoms occur. Preparing the parents to deal with these symptoms is also important. Make sure you have a plan to address any “what-if” questions the parents may have.

Preparation of the health care team and the parents should happen before the child experiences these expected symptoms. In the midst of a crisis, decision making can be difficult. Initiating these discussions may by hard, but they will help make everyone involved (family and health care professionals) more at ease. Of course, you may need to adapt your pain management plan as the child’s illness progresses, so it is important to encourage open communication from the start.

The medications used to manage symptoms in children are the similar to those used in adults at the end-of-life. However, when medications are ordered for children they are based on the child’s weight. Therefore, if there are significant fluctuations in the child’s weight, you should take that into account when assessing or reordering medications.

Age-appropriate assessment

Age-appropriate assessment is an important component of managing the care of children. The developmental stage of the child will influence how you approach his or her assessment. Young children, who are not able to fully verbalize what they are feeling, require astute assessment.

Five-year-olds who have been ill for a long time will likely be able to verbalize that they have pain, where their pain is and how much it hurts. They will likely not be able to rate their pain on a numerical scale, so you will need to use other methods of pain assessment, such as pain scales that use faces instead of numbers to show the degree of hurt. Other activities, such as colouring on the outline of a body where pain occurs, may also help to you determine where a child experiences pain.

Children this age will also withdraw from play or activity if they are experiencing pain or have other symptoms such as nausea. So asking parents about the level of activity their child is engaged in will also be important. No matter the age of the child, parents are often the key informants regarding his or her general health status, behaviours and medication use.

Bereavement support

Recognizing the impact that caring for a dying child may have is important for the health care team. Frequent case reviews, informal and formal support, as well as a death review are beneficial for everyone involved.

The family can also benefit from bereavement follow-up and you should discuss and offer this service if resources allow.

Here are a number of resources that provide excellent information about caring for dying children:

• The Canadian Network of Palliative Care for Children (http://cnpcc.ca) has helpful information with links to many resources.
• The Rainbows Children’s Hospice in the UK offers a practical resource you might find helpful: Basic Symptom Control in Paediatric Palliative Care. These guidelines include suggestions for managing the common symptoms experienced by children at end-of-life.