Hospital for Sick Children in Toronto dehydrating children with disabilities to death based on Quality of Life assessments

The following article represents a synthesis of the findings, with commentary by myself about the study: Parental Perceptions of Forgoing Artificial Nutrition and Hydration (FANH) During End-of-Life Care.

The first part of the article is a synthesis of the study, while the second part of the article is my commentary.

By Alex Schdenberg, International Chair of the Euthanasia Prevention Coalition.

A study entitled: Parental Perceptions of Forgoing Artificial Nutrition and Hydration (FANH) During End-of-Life Care was published in the Journal Pediatrics in its May 5, 2013 edition concerning the reactions of parents to the experience of withdrawing nutrition and hydration (FANH) from a child who was dying or experiencing a low quality of life at the Hospital for Sick Children in Toronto.

The study is based on independent interviews with parents after the child died.

The study sought input from twelve families of children who died after FANH. Three families were not interested in participating in the study and three families could not be reached. A total of eleven parents from six families participated in the study. One family had two children who died after FANH. Six children died after ANH was withdrawn, while one child died after ANH was withheld.

Two of the children died before the third month of life, two of the children died after the third month but before the sixth month of life and 3 children died at age 14 or 15.

Participation in the study was based on parents who were 18 years or older, who lived within 125 miles of the hospital and were fluent in English.

The study first defined the practice of FANH. 

ANH is defined by the Hospital for Sick Children as a life-sustaining treatment that is provided by naso gastric, or gastric tubes. ANH is provided when children cannot meet their dietary requirements or when it becomes unsafe to do so.

 The study states: 

“Although ANH may support biological existence and increase weight, there is no evidence that it improves survival or quality of life in dying children or adults. ANH carries significant risks and potential complications.”

The study states: 

“Providing ANH at the end of life (EOL) is a medical intervention that may be withheld or withdrawn depending on the balance of risk and benefits. Forgoing ANH (FANH) may be considered in the presence of neurologic devastation, irreversible total intestinal failure, and proximate death from any pathological cause. Although denying oral sustenance to children who want to eat or drink (and can do so safely) is ethically and legally wrong, when the potential or actual burdens are believed to outweigh the benefits the option to FANH either completely or by providing small amounts of “comfort feedings” insufficient to sustain life, may be a legitimate method of palliation.”

While many factors for FANH were considered the study found that the primary factor for FANH was the perceived poor quality of life QoL. Pain and suffering was a contributing factor in all but one child, the daughter of the family whose son had already died of the same condition, were motivated by a concern for her future suffering.

All of the parents stated that they found it helpful when professionals shared their past experiences with FANH as well as the evidence from adult medical literature. The parents needed reassurance and continued guidance after the FANH decision was made.

All parents felt that the quality of death was good. Some parents had worried about how death might unfold, and some were disturbed by their child’s changes in appearance as death approached: 

“we just saw him starting to waste away and that was the hard part.”

Some parents felt guilty about their decision and most found it emotionally difficult to watch their child die.

The parents generally believed that their child’s death was peaceful and comfortable. Many of the parents believed that their child’s comfort increased after FANH based on previous problems with feeding.

Some parents were not confident that their child’s comfort increased after FANH, but there was no indication that the child’s suffering increased. Parental doubts about quality of death may reflect their own suffering from watching their child die.

Study recommendations:

1. Physicians should take responsibility for introducing FANH to families who perceive their child to have a poor quality of life.
2. The focus of feeding should be comfort and not nourishment.
3. Physicians should assure parents that under certain EOL conditions, FANH is medically, legally and ethically acceptable and it is not a form of euthanasia.
4. Health care providers should share their knowledge and experience with parents.
5. Health care providers should assume that parents will worry about hunger, starvation and dehydration after FANH. Clinicians must emphasize that feelings of hunger and starvation do not usually occur and good oral hygiene will avoid problems with dehydration.
6. Parents will continue to doubt. Clinicians should guide and reassure the parents.
7. Parents should be offered opportunities to create a legacy.
8. Parents indicated that the multidisciplinary team needs to speak with one voice. The opinions of dissenting team members must be respected however they should not be shared with the family to avoid feelings of being judged.
9. Opportunities should be made for staff to voice their objection with the family being present. 

Conclusion:

FANH is considered a legitimate form of palliation at the end of life (EOL). This is the first study to use interviews to describe the perception of parents whose children died after FANH. FANH was largely determined by the perception of their child’s poor quality of life and related to negative effects of feeding. Parents must decide in FANH is right for their child and reassurance is required by a united medical team. Persistent doubts are common requiring ongoing support form the medical team after FANH.

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Commentary by Alex Schadenberg:

The study Parental Perceptions of Forgoing Artificial Nutrition and Hydration (FANH) During End-of-Life Care does not help parents and health care providers decide when it is appropriate to withdraw or withhold ANH from a child or newborn. 

This study fails to make ethical distinctions between a FANH decision that allows natural death to occur because the child is actually dying and a FANH decision that causes death. 

The study acknowledges the difference between allowing natural death to occur and causing death when it states in the beginning:

"Providing ANH at the end of life (EOL) is a medical intervention that may be withheld or withdrawn depending on the balance of risks and benefits. Forgoing ANH (FANH) may be considered in the presence of neurologic devastation, irreversible total intestinal failure, and proximate death from any pathologic cause."

I can agree with most of the previous statement, but the findings in the study indicate that the Hospital for Sick Children have gone beyond these parameters and the recommendations from the study expands the parameters for FANH.

My concerns:

1. FANH is ethically the same as euthanasia when ANH is withheld or withdrawn from a person who is not otherwise dying, with the intention of causing death. Legally, FANH is not considered euthanasia, even when the decision intentionally denies the basic necessaries of life from a person who is not otherwise dying. 

2. People with disabilities experience significant discrimination and perceptions of cultural bias on a regular basis. Allowing physicians to introduce FANH to families will only perpetuate further discrimination to their existence.

3. FANH decisions should not be primarily based on Quality of Life (QoL). People with disabilities, who at times require ANH, have experienced a long history of discrimination. Perceptions of Cultural bias are often held by care-givers and families. A person with a disability may need to be protected rather than dying by FANH. 

4. The focus of feeding should be both comfort and nourishment. To deny a person with disabilities feeding for nourishment is the sign of systemic discrimination and cultural bias. 

5. It is normal for parents to doubt a FANH decision and re-assuring the parents, when it may be the wrong decision, creates social pressure rather than moral clarity. 

6. The multi-disciplinary team should not be encouraged to speak as one voice, if the FANH decision is wrong. It is not possible to protect vulnerable people when the system pressures dissenting voices to be silent.

Conclusion:

The study lacks objectivity:

1. It assumes that the FANH decisions that were made were ethically acceptable. The study ends up promoting FANH rather than providing guidelines for FANH. 

2. The study does not ask the question, why have three families refused to take part in the study? Was it because their experience with FANH was negative?

This study creates significant concerns related to the care of children with disabilities at the Hospital for Sick Children in Toronto. Negative perceptions of disability are highlighted by a willingness to dehydrate to death children with disabilities who may or may not be dying primarily based on Quality of Life.

Children with disabilities need to be provided a peer advocate (a person with a positive attitude towards disability) to protect their lives from medical care decisions that are not in the best interest of a person with a disability or that will result in their intentional death.

Links to previous articles:

* Canadian Paediatric Society approves the dehydration of infants who may not be otherwise dying.

* Haleigh Poutre video shown at Stepfathers trial.

* Elder abuse and death by dehydration: A personal story.