Health, Ethics, Spirituality, and Value-based Health Care Management

1. Health, Ethics, Spirituality, and Value-based Health Care Management Fatima F. Aly M.D., F.A.A.P Assistant Professor Associate Clerkship Director Department of Pediatrics

2. Values and medical ethics • Respect for Autonomy – the patient has the right to refuse or choose their treatment. • What about a child? • Beneficence – a practitioner should act in the best interest of the patient. • Who is the patient? • Non-maleficence – ‘first do no harm’. • Justice – concerns the distribution of scarce health resources, & the decision of who gets what treatment (fairness & equality). • Which patient deserve the care? • Respect for persons – the patient & the person treating the patient have the right to be treated with dignity & respect. • Truthfulness & honesty – the concept of informed consent/assent.

3. Objectives • Examine health care vignettes from the perspective of spirituality, ethics and health care access. • Identify the appropriate ethical and clinical interactions between patients, their families and the health care provider. • Promote awareness of different spiritual and ethical perspectives and how they play out in health care setting. • Promote awareness of the law and the role of state agencies.

4. Case 1 – Vaccine Refusal Maria is a 2 month old girl, a patient of yours, whose parents bring her for her routine well child check. The parents have been told by their church pastor that some vaccines violate religious tenets & after doing some research online, they also have decided that the medical risk is too high, especially since the chance of her getting any of these diseases is so low. You explain that the risks of the vaccines have been exaggerated; that there is a real risk to Maria if she is not immunized. Maria’s parents explain that they have read some very convincing articles & that medicine can’t promise she won’t become autistic or come down with some other condition. That, for them, is too high a price to pay for their child.

5. Case 1 – Vaccine Refusal The role of parents: • Responsibility • Decision making • Avoiding harm Parents usually want what is best for their children. Parental values are imparted to the children. The role of the physician/pediatrician: • Respecting each child & their family. • Sharing honest & unbiased information with families on an ongoing basis; in ways they find useful & affirming. • The role of physician-family relationship. Community Interest & Public Health: • Compulsory immunization laws in the U.S. • Public health: • Immunized kids – & heard immunity. • Kids who can not or should not be immunized – the ‘sick’ child • Other unimmunized kids. • The law - role of state agencies to override parental discretion.

6. Case 1 – Vaccine Refusal Vaccines are very safe, but they are not risk free; nor are they 100% effective. Maldonado YA. Current controversies in vaccination: vaccine safety. JAMA.2002;288 :3155– 3158

7. Case 2 – Request for Abortion Regina is 16 years old & pregnant. She is considering an abortion & comes to you, her primary care provider, seeking help. Regina says she really needs to talk her options over with an adult who is “outside of her family.” She did not want her parents to know about the pregnancy.

8. Case 2 – Request for Abortion Can you discuss Regina’s pregnancy & her consideration of an abortion with her? Are you required to call Regina’s parents & tell them about her pregnancy? • The rights of the child/adolescent/minor. • Issues of confidentiality. • The rights of parents to know. • Assent/consent. • The physician’s spiritual beliefs &/or conscientious objection. • The physicians’ duty of care. • To refer or not to refer. • The law in Texas.

9. Case 2 – Request for Abortion - Texas Law Do teens need their parent’s permission to get an abortion? Yes. In Texas & Louisiana, state law requires that the parent or legal guardian provide written permission for unmarried teens (under the age of 18) to have an abortion. There are a few exceptions: • The teen can go before a judge & receive permission from the judge to have an abortion without the parent’s permission. “Judicial Bypass”. • Teens who are legally emancipated do not need to have permission from a parent or guardian. • If there is a medical emergency & the pregnant teen needs an abortion, the parent does not have to give permission. http://www.dshs.state.tx.us/wrtk/default.shtm

10. CASE 3 – End of Life issues Anna is 15 years old & has been living with Acute Lymphocytic Leukemia (ALL) for 4 years. Currently she is admitted to the Children’s Hospital with 3 weeks history of fatigue & lethargy. This is her 3rd extended admission in the last 2 years. Clinical evaluation & prognosis is grim. Her parents decide not to initiate any treatment for her ALL & ask the medical staff not to tell her that her ALL has returned; nor about her prognosis.

11. CASE 3 – End of Life issues • The role of parents • Responsibility. • Best interest. • Spiritual & moral values. • Conflict of interest (money/time) • The role of the older child. • Mature minor. • Issues of assent/consent. • The role of the health care providers. • Who decides. Best interest standard V. Harm principle.

12. CASE 3 – End of Life issues Mature Minor Doctrine: • It is a statutory, regulatory or common law policy. • Now considered as a form of patients rights. • Precedence: • Washington Supreme Court, Smith v. Seibly. 1967. • Washington Supreme Court, Grannum v. Berard. 1967. • West Virginia Supreme Court, Belcher v. Charleston Area Medical Center. 1992. "The mental capacity necessary to consent to medical treatment is a question of fact to be determined from the circumstances of each individual case." The Court explicitly stated that a minor may grant surgical consent even without formal emancipation. Mature minor exception to parental consent: 7 factors should be weighed: • Age; ability, experience, education, exhibited judgment, conduct & appreciation of relevant risks & consequences (Mature Minors & Emancipated Minors", Health Sciences Center, West Virginia University).

13. CASE 3 – End of Life issues Mature Minor Doctrine: • Any un-emancipated minor patient who is capable of understanding his/her treatment options, is experienced enough to consider the consequences to him/her of those options, & is mature enough to cope with the information, deliberation & outcomes; should have authority to make the decision at hand.