This draft was more recently revised by a larger group of 50 experts representative of a range of professional, institutional, and social figures (doctors, nurses, psychologists, philosophers, ethicists, parents, and journalists) at a consensus meeting held in Trieste, Italy.
The final version was approved and entitled the "Trieste Charter." The rights of the dying child are
- To be considered a person until death irrespective of age, location, illness, and care setting
- To receive effective treatment for pain, and physical and psychological symptoms causing suffering through qualified, comprehensive, and continuous care
- To be listened to and properly informed about his or her illness with consideration for his or her wishes, age, and ability to understand
- To participate, on the basis of his or her abilities, values and wishes, in care choices about his or her life, illness, and death
- To express and, whenever possible, have his or her feelings, wishes, and expectations taken into account
- To have his or her cultural, spiritual, and religious beliefs respected and receive spiritual care and support in accordance with his or her wishes and choices
- To have a social and relational life suitable to his or her age, illness, and expectations
- To be surrounded by family members and loved ones who are adequately supported and protected from the burden of the child’s illness
- To be cared for in a setting appropriate for his or her age, needs, and wishes and that allows the proximity of the family
- To have access to child-specific palliative-care programs that avoid futile or excessively burdensome practices and therapeutic abandonment
Notably, in the brief Lancet article that introduces the charter, the authors specifically observe the problem of medical futility: "Sometimes, the people closest to them refuse to accept the negative progression of the disease and, consequently, do not recognize terminal illness and death as real and imminent issues to be addressed. As a result, these children are subjected to unrealistic decisions and treatment choices."
The concern that many of us with lifelong severe disabilities have is that these rights do not include protections against parents who would prefer to end the life of their child by withholding medical care that would save the child, or parents who succumb to pressure from hospital doctors to end the child's life. Disability Rights Wisconsin is currently appealing a case involving the death of a 13-year-old boy with developmental disabilities. Their brief describes the case as follows: "They took Patient 1 under their care. They agreed with his parents that the next time he developed a respiratory ailment they would not treat him. When he did then become ill he was transferred to their direct care in the . . . Hospital where the Augmentin [antibiotic] that had been started at the long term care facility was discontinued. His nutrition and hydration were stopped. They facilitated his transfer to a local hospice facility where he was administered morphine and, in his very weakened state, he died." The lower court denied an injunction to prevent similar non treatment of disabled children who would be expected to survive if treatment is provided. A child's right to be spared over-treatment must be balanced with a right to be saved from under-treatment. Otherwise, the stated rights provide no comfort at all, but perpetuate a bias and a doublespeak that threatens the lives of many who deserve a chance at life.
ReplyDeleteThe targeting of the disabled and the elderly to save money for the insurers or for the parents or for the state, i.e. Medicare/Medicaid means,so often, that there is a double effect in play that is not recognized or talked about. Why not?
ReplyDeleteAll advanced directives and all the activists' propaganda in CinC and Hollywo9od aimed at our legislatures are biased toward shortening life by means of manipulating hospital code status with an advanced directive; the patient or the surrogate is giving up the right to life-extending and life-saving treatment in the hospital under circumstances that may or may not occur in the future.
This bias of the advanced directive does save money for all concerned and "hurry up and die" policy is often covered up with "medical futility" and "compassion" policies that may or may not be sincere.
I agree with Diane Coleman. A child's right to be spared over -treatment must be balanced with a right to be saved from under-treatment. ------And since "under treatment" saves money for the institution when the patient is a charity patient or when there is no insurance, or when insurance refuses to pay, the bias is always in play!
The State of Wisconsin convicted parents of a child of homicide because they failed to seek life-extending care for her because of religious reasons.
Yet, the State of Wisconsin will permit physicians who are "state actors" to arbitrarily and without even consulting an ethics committee to shorten the life of a child? .
Double speak and double standard!