Thirteen year old Jahi McMath and her family are at the center of a very important expose of health care ethics and hospital policy.
Miss McMath, age 13, entered Oakland, California, Children’s Hospital on December 9, 2013, for what the family thought was a routine tonsillectomy accompanied, according to newspaper reports, by removal of some other bits of nose and throat tissue, with an overnight stay in the hospital. The tonsillectomy was performed not because her tonsils were infected, apparently, but in order to attempt a cure of a sleep apnea problem. This surgery has become somewhat routine.
Miss McMath, within hours, developed severe bleeding problems which, the hospital claims, sent her into a heart attack. Three days later she was declared brain dead and the hospital began urging the parents to allow them to remove her from the ventilator which was assisting her breathing.
No one seems to have asked the hospital the question of what happened in those three days between the surgery and the declaration of brain death? A heart attack, especially one occurring in a hospital should have received immediate and effective treatment.
The parents contacted the Dolan Law Firm to protect their daughter’s life and force the hospital to keep her on a ventilator.
The story was picked up by local newspapers and from there the news went nationwide. The hospital has refused to give any public statements on the girl’s condition citing privacy laws. Since there was little in the way of factual information on this patient, the debate has centered around the meaning of brain death and, at least in California, the legal authority of a hospital to remove a patient from life support by declaring that the patient is brain dead.
Oakland Superior Court Judge Evelio Grillo, who became known to the pro life community for his defense of Planned Parenthood’s use of privacy rights in refusing to divulge those people involved in an abortion training program of midwives, AB1338, in 2012, issued a hold order on the hospital’s request to remove the ventilator until December 30, giving the McMath family time to find a sub acute care facility that will accept Jahi and treat her as a living patient. They will not divulge the name of this facility or in what city it is located.
Behind the scenes numerous pro life groups became activated in alerting their members to this case and in contacting doctors with expert experience in pediatrics and life-support issues.
The family of Jahi (pronounced Jah he) McMath have from all appearances made all the right moves in protecting their daughter from abusive treatment at the hands of what everyone has always thought of as a well-respected hospital. They have stated that they have health care coverage for the daughter.
Injecting a little bit of irony into all this, Children’s hospital, just prior to all this breaking into the news, mailed out a request for donations praising themselves for the fine work they have accomplished in returning badly injured and disabled children to health, family and community.
Working against a deadline of December 30 and removal of the ventilator, the family has located a facility willing to receive Jahi for continuing care. The catch, however, is that the hospital must perform surgery to attach a gastric feeding tube and tracheotomy to facilitate Jahi’s breathing.
The hospital says it will not do that because it is not efficient use of medicine to operate on a cadaver. They have said, over and over that the girl is dead, completely dead. The family attorney, Christopher Dolan of the San Francisco Dolan law firm, may have to go to court to get an order for these procedures.
California Right to Life and other organizations have been saying for several months that 2014 will see an aggressive drive for a drastic change in end-of-life treatments. We didn’t know it would become major news so quickly.
The media has been fairly positive in its reporting on this situation. However, their bias in this is subtle. They have continued to refer to Jahi in the past tense as though she had died. They would say: Jahi had, or Jahi was. One woman who called our office to ask what she could do to support the family reported that a radio station spokesman had told her that they do not use the word “life-support” preferring the term ventilator.
Ventilator is a neutral word concerning the patient. the term “providing Life-support” is an indication that the patient is alive. It sounds okay to close down a ventilator, but cruel land heartless to turn off a life support system.
Here are some of the issues surrounding end-of-life ethics, treatments and public policy.
Palliative Care: That term refers to providing only comfort and anti-pain medications, no drugs or surgeries. It can also include removal of food and fluids meaning that the patient dies slowly from starvation and dehydration, a la Teri Schindler Schiavo.
Hospice: There are two different ideas about Hospice and how Hospice is to be used. The original understanding of Hospice, originated in England with Dame Cecily Saunders during the 1970’s. It provides treatment for the specific illness(ess) as well as palliative or comfort care and counseling for the patient and family, specifically for cancer patients just prior to that patient’s entry into the dying process.
The second type of Hospice is that which originated in Connecticut led by Florence Wald. Her program based on her training with Dame Saunders, began taking other than just cancer patients and taking them earlier than the traditional time of 6 months estimated prior to death. Hospice of American began in 1982 to receive federal monies through the passage of the Hospice Medicare Benefit. This piece of legislation declared that the hospice treatment was so beneficial to bringing about a peaceful and meaningful closure to life that “every citizen was entitled to it.” See: NationalHospiceFoundation.org placement in a Bay Area extended care facility.
According to Dr. Paul Byrne (cited above) Jahi is now also suffering from acidosis and hypothyroidism due to lack of food and fluids. Her time is drawing very short. The Judge has given the family only until Dec 30, Monday, before the hospital can have its way and remove the child from life support.
This is a technique used in palliative care for a patient exhibiting (presumably) deep and unendurable pain. This is a continuous application of a heavy sedative, usually morphine, given to a patient to ease their pain while allowing them some modicum of awareness and interaction with their care provider and family. However, it has become more the friend of the institution than of the patient. It’s cumulative effect is to so thoroughly suppress all awareness of hunger or thirst and often of consciousness that it hastens the death of the patient, not from their disease but from dehydration and starvation. See PBS.org here
This is what many have been afraid that is being done to Jahi McMath without parental approval.
Palliative care is that type of “care” usually provided when a patient is to become an organ donor. Organs can not be taken from a thoroughly dead person. The organs must be freshly supplied with blood and nutrients. There is no indication as far as we know, that Jahi is being considered by the hospital as a suitable organ donor, but there is speculation about it amongst the medical profession and especially amongst pro life doctors who have become concerned about the secretive use of patients as involuntary organ donors.
Who needs death panels in ObamaCare when hospitals are already involved in setting death criterion and public policy is developing best practices to authorize it.
Speroforum columnist Camille Giglio is a freelance writer residing in California.
To see a full and very informative website on this whole subject please visit the Life Guardian Foundation directed by Dr. Paul Byrne. See LifeGuardianFoundation.org.
Further update, 12/28/13:
Oakland, Ca. Children's hospital will allow Jahi to be moved, but absolutely refuses to perform a tracheotomy or insert a gastric feeding tube, citing the fact that, according to their diagnosis, the patient is dead and it would not be appropriate to perform a surgery on a cadaver.
This lack of cooperation on the part of Children's hospital has allegedly caused the McMath family to lose Jahi's placement in a Bay Area extended care facility.