Palliative care for congenital heart conditions


To "palliate" means to relieve. Palliative care is a form of intensive, active care aimed at the relief of physical and emotional symptoms. It is intended to help a child with a life-limiting condition to live as comfortably and free of symptoms as possible.

Historically, palliative care has been thought of as end-of-life treatment, and this section of the Heart Conditions resource centre chiefly addresses end-of-life care. However, palliative care can be beneficial to the child and family from the time of diagnosis of a life-limiting illness.

Palliative care embraces the child and family as a whole, taking into consideration physical, emotional, spiritual, and social needs. A variety of professionals, including nurses, doctors, and social workers, have expertise in palliative care.

How does palliative care differ from surgical palliation?

Surgical palliation for congenital heart defects, also known as initial palliation or simply palliation, involves easing a child's symptoms and waiting for a specified amount of time until a child is old enough or the conditions are right for interventional treatment.

Surgical palliation is used when a defect cannot be fully corrected but can be modified to improve a child's condition. Many children who had surgical palliation are now young adults being followed by doctors who specialize in adults with congenital heart disease. How long their surgical palliation will extend their lives can only be determined through excellent follow-up in specialized cardiac units.

When will you need to consider palliative care?

Palliative care may be part of your discussion with your child’s health care team for a variety of reasons, including:

  • relief of pain and other symptoms
  • decision-making about goals of care for your child and their quality of life
  • information and support for family members, including brothers and sisters
  • end-of-life care
  • grief and bereavement support

Palliative care can be provided at the same time as cure-directed treatments.

Who organizes palliative care?

Palliative care is generally organized through a team of professionals in a hospital's palliative care service. These individuals count on the services of a full range of other health care professionals to meet the needs of a dying child and deliver the necessary care. This includes doctors, nurses, psychologists, physiotherapists, occupational therapists, social workers, and music therapists.

Where is palliative care provided?

You can continue to keep your child in hospital to receive palliative care, or you can take her home, or you can consider a hospice. Hospices are facilities that provide live-in medical and emotional care for the terminally ill. Some hospices offer in-patient palliative care along with a family room, so the whole family can be together. Some hospices also provide supportive services to help care for a dying child at home. In some places residential hospices are also an option. There are only a few residential hospices in Canada at present, but new hospices are opening up across Canada. Other facilities that provide palliative care include long-term care facilities or group homes.

Can palliative care be provided at home?

In many cases, arrangements can be made to have a child cared for at home. In North America, it is more common for terminally ill children to die in hospital, but home is an increasingly more popular option. Even if your child has a tracheotomy or is on a ventilator, for example, going home is still possible with the necessary nursing support.

If you choose this option, you will be taught the skills you need to look after your child and have time to practice them before you leave the hospital. Home visiting by community nurses will also be arranged. Professionals from the palliative care service at the hospital will talk to your family doctor or paediatrician so they can help you once you get home. Of course you can bring your child back to the hospital at any time.

How do you decide which option is best for your child?

You must consider your child's end-of-life care needs and how you think you and your child will be most comfortable in seeing them met, with the support available. The choice is entirely up to you and your family. Some parents feel dying at home is more private and comforting for the child. Others prefer the hospice option, which offers the medical care but in a non-hospital environment. Some want the peace of mind of having their child cared for in hospital at all times. Another consideration is whether you're in a big city or a small town, where the options and community support may be fewer.

Who can help with the decision-making?

If you are trying to make a decision about your child's end-of-life care, the treatment team may refer you to the palliative care service at the hospital. You can also ask for a referral to this service. Professionals in this service will offer guidance to the medical team and the family on how to care for a dying child. This is accomplished by encouraging shared decision-making, enhancing choices, facilitating the care of children at home when possible and desired, and by supporting children and their families through the living, dying, and grieving experience.

If you are referred to the palliative care service, a member of the palliative care team will discuss all the issues with you and provide the support necessary to make the transition home, if that is your choice. These individuals are there for you, and will not judge your decision, since it is completely a personal one. Throughout, the palliative care team and the medical team will be involved.

How do you make sure your care wishes are followed?

How you want your child cared for is up to you and your child. The palliative care team may suggest that you put your wishes in writing so that everyone involved is aware of your expectations. This is sometimes referred to as a directive. You are, however, always entitled to change your mind. Be aware that if your child is at home and her condition deteriorates and you panic and call for emergency medical services, the paramedics who come to your home are required to resuscitate or provide other life-saving treatments, which are referred to as extraordinary measures.

Will you have to see your child suffer?

Parents seem to worry most about seeing their children in pain. The necessary steps can be taken to make sure your child gets medication or other non-pharmacological pain relief so that she is not in pain. Doctors will balance pain control with lucidity, so that you can still meaningfully communicate with your child and your child can be pain-free.

Laura Beaune, RN
Christine Newman, MD, FRCPC