A psychologist, social worker, chaplain and/or spiritual leader can help you, your co-caregiver, and other family members (including your child and siblings, if appropriate) to identify any fears, issues, and concerns, either together or separately. Your child’s primary physician, who likely knows your child and family well, can be an important resource in addressing your questions. A palliative care clinician or hospice team can support you and your child in processing strong emotions and attending to your family’s wishes. A grief counselor can be especially helpful before or after the death of your child.
Advance Care Planning and End of Life
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Considering your child’s end of life may feel like an impossible prospect, but many parents and caregivers do address this possibility as early as the initial diagnosis. While hope is always a part of the care plan, that hope can change shape as conditions and/or prognosis shifts. There are obviously no guarantees that things will happen in a predictable fashion; the goal is simply to have an idea of what may lie ahead and to consider how you are likely to respond.
Advance care planning (ACP) is a term for conversations, held with clinicians, that look ahead to treatment choices and goals of care for a child (or anyone who is ill or aging). While it may feel overwhelming or scary to consider ACP, a small number of studies have shown that most caregivers find it helpful and do not regret it. In fact, ACP tends to allow for meaningful conversations and experiences to happen. It helps family members see that they have choices and some control in this out-of-control situation. If your child is a minor (under 18) and cognitively capable, you will want to know their wishes and include them in planning for their end of life. If they are 18 years old or older and cognitively capable, they will be legally responsible for directing their advance care plan, most likely with your support.
ACP and Goals of Care
Advance care planning has many aspects having to do with your goals of care for your child and family. As you consider your child’s end of life and possible medical orders, you may want to reflect on questions like these:
- What might a good death look like for you, your child, your family?
- What could be done now to make your child’s death less frightening or difficult?
- Where would you and your family want your child to be, if possible, during the final
days/weeks? For example, at home, in the hospital, at a hospice home? - Who would you and/or your child like to have with you?
- Who will you call to support you when the time comes?
- How would you, your child and family wish to remember and memorialize your child?
Advance Directives
Directives are legal documents that state what actions should be taken in certain medical situations. They are typically signed and notarized. Clinicians and emergency medical teams will want to understand your wishes for your child, and your tolerance for certain interventions.
One of the most difficult decisions that you may have to make is whether there should be attempts to revive (or resuscitate) if your child’s heart or breathing stops. The most common directives are Do Not Resuscitate (DNR) and Do Not Intubate (DNI). Medical Orders for Life-Sustaining Treatment (MOLST) and Physician Orders for Life-Sustaining Treatment (POLST) address these topics in more detail. (Note that these options vary by state.)
You can always change these directives, but it is important to have them and to make certain that they are up to date. If you don’t have them, ask your palliative or hospice care team or a social worker to explain them to you and to help you complete them. If you have them, make certain that they are easily accessible to medical staff who will need to know your wishes. Note that if you do not have directives, or if they are not readily available in an emergency, the medical team will do everything possible to sustain your child’s life. Your directive may be to do so–but if that is not your wish, you will not have another choice.
Anticipating your child’s end of life is charged with all kinds of thoughts and feelings. Some cultures frown on even discussing the end of life. Some caregivers hesitate to plan, fearing that they will make their child’s death happen sooner. Some worry that even thinking about their child’s end of life signals that they have given up, that they are failing their child. They may also worry that others—especially their child and the medical team—will give up as a result. This is never the case. You and your child’s care team will continue to respond to and follow the lead of you and your child.
Planning involves making certain decisions and facing the possibility of regret for those decisions. Fear of “falling apart” at a child’s end of life is also common and understandable. The emotional aspects cannot be underestimated and reactions can’t always be foreseen. You may find that identifying and discussing options around what can be anticipated will help you gain a sense of control over the uncontrollable.
Siblings can also be involved, depending on their age and interest. You may wish to work with your child’s primary physician, a psychologist and/or palliative clinician to prepare for these conversations and for help in anticipating and responding to the questions and feelings that will arise.
End of Life Considerations
Planning also has a number of practical aspects for you to address.
Arrangements
You will need to consider your preferences and arrangements for your child’s body. You may want a burial or cremation, or something else. These practices are sometimes dictated by faith traditions, so if that is important to you be sure to consult a spiritual advisor. Some families find it helpful to think about aspects of a memorial service identifying a location, participants, music and readings. As hard as it may be, considering these things in advance of your child’s death can be helpful.
Pronouncing Death
Death must be pronounced by a medical professional. If your child is at home, first responders will come and support you. (Note that first responders are obligated to perform resuscitative measures unless you have documented other wishes.) The funeral home will care for the body after it leaves your home or the hospital or hospice setting. They will make arrangements based on your wishes, including arrangements for donation if you have requested this and placing obituary notices. Funeral homes also can arrange for a memorial service at a chapel, place of worship, graveside or other venue that you choose. This is something you will want to discuss with their professionals. If you don’t know a funeral home or can’t consult one, ask a trusted person to do this for you.
Organ Donation
Some families want to know about organ, tissue or tumor donation as a part of their child’s legacy or as a way of giving back to science. Autopsy can be regarded in the same way, as it offers the potential to learn about the child’s medical condition and/or the effectiveness of interventions that were used. There are specific things to know about donation and/or autopsy. Clinicians, however, may avoid the topic because they want to protect families from yet another hard decision. If you are curious, it is advisable to learn more before the time of death, as donation in particular is very time-sensitive. Do not hesitate to ask your clinicians to assist you in learning about the options. Again, some faith traditions prohibit donation and/or autopsy, so if that is important to you be sure to consult a spiritual advisor.
