Aid-In-Dying: A Declaration of Independence from Terminal Cancer
/In February 2017, in the case of Arthur v. Dunn, the Supreme Court rejected the appeal of death row inmate, Thomas D. Arthur, to be executed by a firing squad, which offered a potentially less painful, faster death in comparison to lethal injection. In a dissent to the Supreme Court’s decision, Justice Sonia Sotomayer wrote, “In addition to being near instant, death by shooting may also be comparatively painless. Justice Sotomayer also stated, “Condemned prisoners, like Arthur, might find more dignity in an instantaneous death rather than prolonged torture on a medical gurney.”
After reading the quoted statements, I was mentally consumed by the juxtaposition of the concept of dying with dignity in death row inmates vs. patients with terminal cancer. Lethal injection has been criticized as inhumane due to shortcomings in executions where inmates have experienced pain and suffering on the approximate scale of an hour or two from the time of initial drug administration. Many terminally ill cancer patients suffer difficult, painful deaths for significantly longer than the “prolonged torture on a medical gurney” death row inmates have experienced as stated by Justice Sotomayer.
Medical aid in dying (MAID) is the prescription of a lethal dose of medication by a physician to be taken voluntarily by a mentally competent, terminally ill patient. Oregon, Washington, Vermont, California, Colorado, and Washington D.C. have Death with Dignity statutes. Montana has the end-of-life option via Supreme Court ruling. Safeguards require patients to be terminally ill adults who reside in of one of the participating states. Patients must be mentally competent, not depressed, capable of making medical decisions for themselves, and determined to be acting voluntarily. Patients must make 2 oral requests, 15 days apart followed by a written request. Patients must ingest the medication themselves. Even if a patient is approved for a MAID prescription, they are under no obligation to ever use it. MAID is not euthanasia, which is illegal throughout the entire United States, as physicians do not directly administer the medication to patients. MAID is not assisted suicide. These patients are not suicidal and must be medically cleared of any mental health illness or potential depression as part of the vetting process.
Terminally ill cancer patients are a unique subset of patients with distinctive unmet needs. Chemotherapy, radiation, immunotherapy, and surgery are associated with a broad spectrum of side effects, some which are permanently debilitating. The collateral damage ensued by these treatments are often silently accepted to be the price to pay for choosing to fight cancer in hopes of preserving life. Unfortunately, some cancers continue to ravage on in utter defiance of every gold-standard treatment and medical strategy that is employed. When all options have been exhausted, patients are referred to hospice for comfort care. Hospice provides significant benefits to both the patient and their loved ones. But what happens when hospice fails to bring comfort, pain relief, and peace to terminally ill cancer patients?
Opponents of MAID state the practice is unnecessary as hospice can manage all pain associated with end-of-life. Unfortunately, it is well known that many terminal cancer patients die after prolonged suffering in pain while in the care of hospice. Cancer pain management is complex, comprised of a collection of cancer pain syndromes that may require multidisciplinary expertise for management. Hospice staff may not be adequately trained to manage multifaceted situations presented by terminally ill cancer patients. Hospice also has limitations that impact their level and quality of care. Medicare may not cover services and medications that are most needed in terminally ill cancer patients. Restrictive enrollment policies prevent enrollment of patients utilizing palliative chemotherapy or radiation. It’s interesting to note that in a society that values life, terminally ill patients are required to forego all curative therapies in order to qualify for hospice. Many facilities are understaffed, with many reports of lack of continuous support by hospice during times of patient crisis. Distressed cancer patients receiving hospice care at home are often transported to the emergency room and admitted. There they are subjected to needles and IV’s, often over-treated and over-medicated. Doctors may resuscitate, crack ribs, intubate, perhaps do an emergency surgery or procedure, or place the person on a ventilator. Hospitalized for their remaining days or weeks, patients develop bedsores, pneumonia, delirium, and increased risks for falls. They are heavily medicated and hooked up to more monitors and machines than they ever could have imagined.
Physicians who are opponents of MAID state the practice violates the doctor-patient relationship and their Hippocratic vow to do no harm. Perhaps in subsets of cancer patients with terminal disease, the harm has already been done. These are patients who have followed the recommendations of evidence-based medicine, often having endured multiple rounds of chemotherapy and are now consequently plagued by side effects such as crippling bone and joint pain or excruciating peripheral neuropathy. These are patients who may have endured multiple rounds of radiation and consequently may have permanent, unbearable damage to the esophagus, brain, or heart. These terminally ill cancer patients may have endured numerous surgeries and resections of their tumors, often sacrificing healthy organs and tissue in pursuit of life. On top of mounting chronic treatment side effects and uncontrolled disease, perhaps they have lost control of their bowels or have a colostomy bag. Some patients experience severe nausea and vomiting requiring a percutaneous endoscopic gastronomy (PEG) tube for relief. A previous client of mine with terminal cancer referred to himself as a medically altered, part artificially functioning version of his pre-cancer self, forced to endure prolonged and unnatural suffering.
Most patients seeking MAID are not primarily looking for relief of physical pain and suffering. At the time they request MAID, they greatly value their lives and quality of life and are seeking to preserve the authenticity of their life. Many seek preservation of autonomy, dignity, and compassion, virtues that elude the tangible framework of medical treatment and care. Many fear the loss of control and medical manipulation described above. In the cases when medicine cannot cure a cancer, where palliative care is not enough to manage treatment side effects, where hospice cannot provide solace and support, and hospitals continue to admit and readmit, prolonging death unnaturally in the last days and weeks of a cancer patient’s life, what choices do terminal cancer patients truly have at the end of their life?
Not all terminally ill cancer patients will seek or need MAID. MAID should not be viewed as the primary resource for end-of-life care, but rather another choice in the delicate decision process. For many terminally ill cancer patients, MAID will never be a consideration due to personal, cultural, or religious beliefs. For those with access, palliative care may be enough to manage cancer patients’ treatment side effects while they are undergoing cancer treatment. For most patients, hospice will be a beautiful experience and should lead to a supported, peaceful death. We cannot, however, continue to turn a blind eye to the populations of terminally ill cancer patients that wish for another choice. Terminally ill cancer patients should have a right to be given the choice to request MAID within the proper safeguards. And even if they are granted the choice, not all will exercise that right. But having the choice and option may make all the difference. Doctors should not be forced to participate in writing lethal prescriptions and in the same respect, doctors who do should not be ostracized by the medical community, accused of homicide, or slandered by the media. Legal, medical, and religious organizations all have a responsibility to contribute and continue to improve end-of-life care. But let’s empower the actual terminal cancer patient with a choice FIRST.