Living in Massachusetts, we have been mercifully spared a lot of the campaign stuff for the presidential election. Granted our Senate race, between Scott Brown and Elizabeth Warren, has visibility. I’ve seen several letters to the editor and op-ed pieces about each one. (I don’t really watch TV, so I’ve been spared on that front.)
I haven’t seen much, however, on Question 2, physician aided dying, which appears on our ballot next month. Arguably it has greater overall significance than any individual race as almost everyone may have to face the end-of-life question, whether as a dying person or as someone who must attend to or care for a dying loved one.
Seeing such an absence of its coverage in the media, I held two roundtable brown bag discussions at church. There wasn’t enough time to prepare a formal program and complete it by Election Day as this is a complex topic. The United Church of Christ prepared a six-session curriculum on it (it’s not linked well, but you’ll find it).
It’s a question that we don’t think about often, but should, and the response to the discussions makes me want to do something outside of the election cycle. I’ll probably do something after the first of the year.
The law behind the question is pretty extensive. Given the weight of the issue, the law tries to ensure that people do not choose this option to take their own life without medical certification. The basics of the proposed law:
- A person must be medically certified by a licensed physician in Massachusetts to have a terminal illness with a life expectancy of six-months or less.
- The patient can request the physician to authorize a prescription for medication to end life. In order to ensure the patient’s certainty, the patient must request it a second time no less than 15 days after the first request. The physician must then offer the patient an opportunity to rescind the request. Should the patient insist to proceed, s/he must sign a consent form, which must bear the signatures of two witnesses, one of whom is not a relative, a beneficiary of the patient’s estate, or an owner, operator, or employee of a health care facility where the patient receives treatment or lives.
- The patient must self-administer the dosage.
- The program is voluntary.
Arguments for the law address the heartbreak of suffering and the need to have ultimate control over one’s life.
I noted, though, the law does not provide enough safeguards. Examples:
- Although a provision in the law notes that a physician can refer a patient to psychological counseling if s/he believes such counseling is necessary, it is not mandatory.
- There are no provisions to provide the patient with alternatives for end-of-life care.
- A diagnosis of six-months is a guesstimate. Sometimes people live longer than the six-month estimate.
Interestingly, some people at the table wondered about the safety of the medication in the house. What happens if someone takes it by accident? What happens to it if the patient dies without taking it, how is it destroyed?
I provided a handout with end-of-life options, which I took took substantially from the UCC curriculum:
- Advance Directives – An advance directive is usually a written statement made by a competent person about choices for medical treatment or selecting a substitute medical decision maker. The advance directive normally takes effect only if the person should become unable to make such decisions or communicate them at some time in the future. It makes our preferences known to health care providers and others who know us and care about us.
- Health Care Proxy or Durable Power of Attorney for Health Care – This advance directive allows an individual to appoint another person called the Health Care Agent, to make health care decisions for the individual should that individual not be able to make decisions for him or herself.
- Living Wills – A living will specifies what the individual wants or does not want done in the event he or she becomes incapacitated or unable to participate in the discussions about his or her medical treatment decisions. It can be as specific or general as an individual wishes.
- Do Not Resuscitate (DNR) Orders/Do Not Intubate (DNI) Orders – A DNR Order is a directive in the medical record that precludes the use of resuscitative measures such as chest compressions, artificial respiration, defibrillation, and/or cardioactive medications in the event of cardiopulmonary arrest – if a patient’s heart stops or he/she stops breathing. In other words, a “code” is not called and attempts to resuscitate are not begun. A DNI Order means that a breathing tube will not be inserted down the throat if a patient experiences breathing difficulties or respiratory arrest.
- Pain Management – Pain management includes careful attention to patients’ description and understanding of the meaning of pain; evaluation of the history and current status of the disease process that is likely causing the pain; thorough physical examination of the places where it hurts; discussion with the patients and their families about options for pain relief; establishment of an individualized pain care plan; use of pharmacological (medicines) and non-pharmacological methods (such as heat or repositioning) to provide relief; regular reassessment of pain to determine effectiveness of methods used; changes in dosages or combinations of medicines in response to patients’ needs; attention to breakthrough pain or new kinds of pain; and prevention of unnecessary pain, such as the procedural pain of blood tests when the answers really will not matter anymore.
- Palliative Care – Palliative Care is “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
- Hospice – Hospice provides patient-centered palliative care for individuals who are terminally ill. Hospice combines emotional, spiritual and social support with expert medical and nursing care delivered by an interdisciplinary team of specially trained health professionals and volunteers. Hospice provides support for the entire family and deals with the social, emotional and spiritual issues that may arise.
- “Terminal Sedation” – For some dying patients, the profound pain that may occur when dying may not be relievable by any other means than terminal sedation. Terminal sedation uses sedatives that make the patient unconscious until death occurs from the underlying illness.
- Voluntary Stopping Eating and Drinking (VSED) – Voluntary Stopping Eating and Drinking, referred to as VSED, (is) the option to forgo food and fluid, while receiving supportive comfort care until death arrives.
I plan to vote against Question 2. I also know colleagues who would vote for it.
I can’t say this categorically without stating that I am also a hospice chaplain. I don’t think the law has enough safeguards. As written it leaves much of the decision in the patient’s hands without consulting family members; they cannot help but to be affected if a patient carries out his/her decision to die under this law.
While I know that ameliorating suffering is a factor in favor of this law, there are options to suffering as noted above.
I also cannot overlook that costs could be a factor in making a decision to die before life naturally ends. This really bothers me. It’s an indictment upon our medical system that this should be a factor at all. Bill Keller of The New York Times wrote a beautiful essay the other week about the death of his father-in-law. End-of-life care is expensive, and we could subject it to a cost-benefit analysis. But as Keller wrote, “the case for a less excruciating death can stand on a more neutral, less disturbing foundation, namely that it is simply a kinder way of death.”
Our discussions made me think of an article, again from The New York Times, from a few years ago. It touchingly reported about end-of-life care at a convent with a special wing set aside for nuns in their last stage of life. The article reported that the doctor who cares for the nuns found “that the sisters’ religious faith insulated them from existential suffering — the ‘Why me?’ refrain commonly heard among those without a belief in an afterlife. Absent that anxiety and fear, Dr. McCann said, there is less pain, less depression, and thus the sisters require only one-third the amount of narcotics he uses to manage end-of-life symptoms among hospitalized patients.”
We talk a lot about living, but not a lot about dying. Yet, we can’t have one without the other. Maybe we won’t have to deal with ballot questions on dying if we have places where we can talk thoughtfully and quietly about what living really means as we also note that our lives are not forever. This is one place the church and all our faith communities can distinguish themselves from all the other community institutions. Where else can we have this type of conversation and discussion?
Maybe when we come to understand life in this way, we will be more grateful for what we have and know better what really matters. Who knows, we may learn to live better.