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Dear Bishop ________,
I turn to Your Excellency with trust, hoping and praying that you will read this letter and respond as soon as possible. My concerns are twofold: (1) a letter signed by Jeff Patterson, Executive Director of the Texas Catholic Conference, that attacks the character and motives of those who oppose SB 303, a bill to amend the “medical futility” section of the Texas Advance Directive Law (Chapter 166.046 of the Health & Safety Code); and (2) the flaws in SB 303 that have led myself and others to oppose this bill. (Please refer to the enclosed group letter distributed to all legislators in Austin for the names of organizations and individuals who oppose SB 303.)
For over 40 years, I have been actively involved in efforts to protect the lives of medically vulnerable human beings. Currently, I am a volunteer patient advocate and serve as the chair of the Pro-life Healthcare Alliance (PHA), a committee of Human Life Alliance, which strives to renew reverence for life within healthcare.
Organizations and individuals often disagree on the best way to address a problem, but this should not lead to vitriolic attacks on one’s opponents. Mr. Patterson’s letter accuses Texas Right to Life, and, by extension, all who oppose SB 303, of “misstatements,” “fabrications,” and “disingenuous tactics;” impugns our actions as “egregious and cynical;” asserts we have “tried to stoke fear” with “ridiculous” and “absurd” claims; and more. This letter by Patterson does not seem to me to be the Christian way to disagree with those who, in good faith, hold a different position on legislative action to protect the dying and disabled.
Mr. Patterson’s letter is posted on the TCC website and the diocesan Respect Life offices have sent it to the local coordinators across the state. Mr. Patterson does not cite any proof of his allegations, but, even if proof were provided, would this letter, written on Texas Catholic Conference letterhead, appropriately represent the leaders of the Church in Texas? Also worth noting is that, in his letter, Mr. Patterson did not explain the merits of SB 303, nor take advantage of a golden opportunity to parallel SB 303 to Church teaching, rather he simply lodged invectives at those opposed to SB 303.
I am seeking Your Excellency’s advice regarding how to respond to this letter. A response is urgently needed because this letter is causing much confusion and is damaging, not only to those who are its subject, but, even more importantly, to the reputations of the Texas bishops and our Church.
My second concern is SB 303 itself. The Texas Catholic Conference is promoting SB 303 with the good intention to improve the law. However, in the view of those of us who oppose SB 303, it does not improve the law, but actually makes the law less patient-friendly by giving more power to treating facilities to deny patients the life-sustaining treatment and care they want.
The current “medical futility” section of the Texas advance directive law strips patients, their families and their legally appointed surrogates of the right to make their most important health care decisions and empowers a committee of strangers, that is, a hospital-appointed ethics committee. Ideally, we would like to see the “medical futility” law repealed, but most important would be to eliminate the rule that, once the hospital ethics committee has issued a “medical futility” decision, the patient/family has only 10 days to find another facility willing to take the patient before the hospital cuts off all treatment, including the provision of nutrition and hydration. SB 303 would merely extend the transfer time from10 days to 21 days.
Many people have already been harmed by “medical futility” decisions. Texas Right to Life has assisted over 100 families when “medical futility” decisions threatened loved ones with denial of treatment against their wishes. Transferring patients to more appropriate care settings is always the goal of those of us who serve as patient advocates, but doing so within the 10-day or 21-day (in SB 303) time period presents endless challenges.
In “medical futility” cases, I have found it is often the patient’s life that is considered “futile” and the hidden intention is to cause the patient’s death. The Catechism of the Catholic Church clearly states, “The decisions [to discontinue medical procedures] should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.” [2278]
Another objection to SB 303 is that the section addressing “Do Not Attempt to Resuscitate” allows a DNAR order to be issued with only notice to, not consent of the patient/family/surrogate. If the patient/family/surrogate objects to the DNAR, they must petition in writing for an ethics consult from the same people who authorized the DNAR. This ethics committee can override the patient/family/surrogate wishes by deciding to keep the DNAR in place. The committee makes the final decision, not the patient.
Upon your request, I will be happy to provide you with an in-depth section-by-section analysis of SB 303.
I pray daily for Your Excellency and all the bishops of Texas. Thank you for the guidance you provide to those of us who strive to live our lives as faithful Catholics.
Sincerely in Christ,
Julie Grimstad, Chair
Pro-life Healthcare Alliance
Enclosure
THE PATIENT’S PLIGHT:
TEXAS “MEDICAL FUTILITY” LAW AND SB 303/HB 1444
By Julie Grimstad
Perhaps those of us who oppose SB 303/HB 1444 have been approaching our concerns about this bill in a way that does not resonate with individuals unaccustomed to reading and analyzing laws. People may understand our objections if we analyze the bill from the patient’s vantage point.
In the following two hypothetical scenarios, you, the patient, are deemed competent to make your own decisions, but may need the help of others—your family, surrogate or sympathetic professionals—to fight for your right to receive life-saving or life-sustaining treatment. Some competent patients, unfortunately, may have no family or surrogate to help them challenge an unwanted DNAR (Do Not Attempt to Resuscitate) order or a “medical futility” decision. And patients who are either mentally incapacitated or deemed incompetent by physicians are in even greater jeopardy than competent patients.
Forcing an extremely ill patient, his family or surrogate through the futility process is inhumane. Doing so pits physicians against patients by forcing the patients and their families to (1) defend their right to make their own medical decisions and (2) defend their very right to life before an ethics committee—an assembly of people selected by the hospital. Neither the current “medical futility” law nor the proposed changes contained in SB 303/HB 1444 give primary consideration to the welfare of patients.
Physicians employed by hospitals and the committees appointed by the hospital are given all the power to make the final medical decisions for patients. Furthermore, physicians, and health professionals acting under the direction of a physician, are granted immunity from civil or criminal liability and assured that they will not be subjected to review or disciplinary action for refusal to provide wanted life-sustaining treatment to a patient. [See Section 166.012 (j) of the engrossed version of CSSB 303.]
Definitions in Current Law [Sec. 166.002 and Sec. 166.033 of the Texas Health & Safety Code]:
“Life-sustaining treatment” means treatment that “sustains the life of the patient and without which the patient will die. This term includes artificially-administered nutrition and hydration.
“Terminal condition” means an incurable condition caused by injury, disease, or illness that will produce death within six months, even with available life-sustaining treatment.
“Irreversible condition” means a condition, injury, or illness (1) that may be treated, but is never cured or eliminated; (2) that leaves a person unable to care for or make decisions for the person’s own self; and (3) that, without life-sustaining treatment…is fatal.
SB 303/HB 1444: Sec. 166.012. STATEMENT RELATING TO DO-NOT-ATTEMPT-RESUSCITATION ORDERS.
Scenario: You are a patient who is seriously ill, weak and unable to rise from your hospital bed. You have been diagnosed with a terminal condition, but you are still full of life in many ways. A hospitalist (a physician who works for the hospital and treats only hospitalized patients) enters your room and tells you that he intends to code you “DNAR,” meaning write a DNAR for your medical file. He may or may not discuss with you the reasons for this DNAR. You are devastated, feeling like this doctor, who does not know you, is telling you that he sees little hope and you should just give up. You object. He tells you to take the matter up with the hospital ethics committee.
You discover that you, your family or surrogate, and not even your attorney, can simply request that the DNAR order be removed from your medical file. You must submit a request in writing for a review of the disagreement over the DNAR by the hospital ethics committee. Until you have submitted that request, the DNAR is in your medical file, so you are under pressure to hurry and write or type a letter while you are lying in a hospital bed, in fragile health and, to some degree, disabled by your illness.
Once your written request is received, the DNAR order is temporarily removed from your file. You now have seven (7) days to prepare for the ethics committee review. How do you prepare for such a meeting when you are weak, distressed by your illness, and perhaps having difficulty communicating? Will the burden of being forced to defend your objection to the DNAR order be detrimental to your overall well-being? Will the stress impede your chances of recovery, increase your risk of a cardiac arrest, or perhaps dash your hope for just a few more weeks or months of life?
You may not feel able to stand up against people who are medical professionals or who you believe are not in your corner. After all, this hospital-appointed committee will make the final decision, not you. If the committee sides with the doctor, the DNAR order will be put back in your medical file in a mere 21 days. Your only option is to quickly find a different healthcare facility that will not code you as DNAR. If the stress doesn’t kill you, the transfer to another facility may be the final straw.
Note: According to this section of the bill, (g) you do not even have to be notified that a DNAR is being placed in your medical record if, based on reasonable medical judgment, (1) your death is imminent or (2) resuscitation would be medically ineffective. How long is “imminent?” What is “reasonable medical judgment?” The law does not clarify these terms. Likewise, “medically ineffective” is not defined and may be interpreted as not effective in maintaining what the doctor deems an acceptable quality of life. But, what if you view life itself as precious? What if your family wants to help you live with your illness or disability?
Current Law: Sec. 166.046 Texas Health & Safety Code: PROCEDURE IF PHYSICIAN DISAGREES WITH AND REFUSES TO COMPLY WITH HEALTH CARE OR TREATMENT DECISION.
“Medical futility” laws are based on “futile care theory:” When a patient reaches a certain stage of illness, injury, disability or age, treatments other than comfort care are considered “futile” and may be withheld or withdrawn because a physician/ethics committee deems life-extending medical treatment to be either too burdensome for the patient or too expensive.
No one can live indefinitely—as some proponents of SB 303/HB 1444 seem to think—no matter what medical interventions are employed. However, when a physician decides to withdraw or withhold life-sustaining treatment—defined as “treatment without which the patient will die”—against your wishes, he may be depriving you of days, weeks, months or possibly even years of life. Of this the patient can be sure: the hospital will deprive you of the peace of mind that comes from trusting the physicians who care for you. If you do not or cannot fight a “medical futility” decision, life-sustaining treatment will be stopped immediately. If you protest that decision, an ethics committee will review your case and make the final decision. Under current law, if the hospital ethics committee rules against you, you have only 10 days reprieve before your treatment at that hospital ceases. Under SB 303, you will have 21 days. In either case, those days or weeks, which may be your last on earth, will not be spent peacefully with family and friends. They will be spent desperately trying to find another facility that will admit and provide the treatment you want. You and your loved ones will be fighting for your life and fearing the very healthcare professionals you should be able to trust to protect and preserve your life to the best of their ability.
Imagine that a physician refuses to comply with your advance directive or a treatment decision made by you. She defends her “medical futility” decision based on her subjective assessment that the provision of treatment needed to preserve your life would [sub. (a-1) (3) and (a-2) (3) in SB 303] “result in severe irremediable physical pain or discomfort not outweighed by the benefit of the provision of the treatment.” The physician cannot know how much you are willing to endure for even a few more days, weeks or months of life, particularly if she does not ask you. Furthermore, pain and discomfort are experiences of the patient. If treatment may be of benefit, the decision should be yours as to whether or not the benefit is worth the discomfort and pain.
How much and what type of suffering one is willing to endure is a personal decision that belongs to the patient to make according to his own value system; another’s concept of suffering must not be imposed upon a patient by an imperialistic “medical futility” law that allows a physician to impose involuntary denial of treatment on a patient.
Note: That the provision of treatment would “result in severe irremediable physical pain or discomfort not outweighed by the benefit of the provision of the treatment” is only one of several reasons outlined in SB 303/HB 1444 as justification for a physician’s decision to refuse to provide life-sustaining treatment that you want or your surrogate requests.
Scenario: You are diagnosed to have terminal pancreatic cancer. Your oncologist predicts that your life expectancy is three weeks to two months. He offers you various treatment options and explains the possible benefits and burdens of each. You choose aggressive treatment with chemotherapy. Two years later, you are very much alive and, even though chemotherapy has been extremely difficult, you continue treatment and often enjoy time with your spouse and family and occasional leisure and exercise activities.
Unfortunately, you contract a cold that develops into pneumonia. Because of your weakened condition, treating you is complicated. Your doctor advises hospitalization. In the hospital, you are intubated to assist breathing and then contract a staph infection, which is difficult to treat and progresses to a life-threatening blood infection. A hospitalist tells you that he has decided to stop all treatment because the benefit of treatment is outweighed by the irremediable discomfort you experience. Not only is he going to discontinue chemotherapy, you will also be denied antibiotics and other measures to treat your pneumonia and staph infection. This is a subjective quality of life/value of life judgment, not based on the effectiveness of treatment. You protest. He tells you the matter is being referred to the hospital ethics committee. You are faced with having to defend the value of your own life!
In disbelief, you receive a letter “inviting” you to attend this meeting, which was caused by the dispute over you wanting to continue to live and the hospitalist’s decision to stop treatment, which will hasten your death. SB 303 would extend the 48 hours notice of the futility review meeting required in the current law to seven days notice, that is, seven days to prepare for this meeting, whether or not you feel well, energetic, or equipped enough to do so. The hospital appoints a liaison to assist you through the process, but you wonder if you can trust someone appointed by a hospital that seems to want you to die. Your fear and anxiety are mounting.
You are too weak to attend the ethics committee review, so your surrogate will represent you. Your surrogate is permitted to have five people accompany him at the hearing. (At the committee’s discretion, more may be permitted.) The hospital’s agents on the committee are not limited in number, unlike your family and friends who would advocate for you at the meeting. Your family doctor, pastor, wife and two children accompany your surrogate. They present your best case, go back to your hospital room and wait nervously. Behind closed doors, the committee decides your fate. If the committee affirms the hospitalist’s “medical futility” decision, you race against the 21 day clock to find another facility willing to take you.
The committee agrees with the hospitalist. You are now officially a “medical futility” case. What facility will agree to take a patient with a terminal diagnosis and who has a staph infection that he contracted at another hospital? Good luck.
Imagine the 20th of the 21 day period. You have not yet been transferred to another facility. You have only one more day until all life-sustaining treatment, including nutrition and hydration, will be stopped. Your family would like to take you home, but they cannot provide the medical treatment you need to live. Your family is inconsolable. You are scared and in shock. This is not the way you imagined dying. The stark reality is that there will be no safe haven for you in your final days.
This is the plight of the patient under SB 303/HB 1444.
ABYSSUS ABYSSUM INVOCAT / DEEP CALLS TO DEEP 