On Aug. 1, New Jersey officially becomes the eighth state in the nation to allow its terminally ill residents to hasten their death with prescribed medications. Patients must find two physicians to certify that they are within six months of death, and also must be capable of taking the medications themselves.
That may sound fairly straightforward, but it may not be easy to immediately take advantage of the new law, which advocates say could free patients from suffering and disability at the end of life.
Sean Crowley, senior media relations director for Compassion & Choices, expects a slow start. In Oregon, where the first aid-in-dying law took effect Oct. 27, 1997, the first patient used it on Feb. 12, 1998. “None of these laws take off like a shot,” he said. “That’s just not how it works.”
State agency regulations and health-system policies are still being formulated, although the state has promised “guidance” before the bill takes effect. Assemblyman John Burzichelli, the Gloucester County Democrat who was lead sponsor of the Medical Aid in Dying bill, said that’s no reason to delay, because the regulations will likely just duplicate what’s in the detailed bill.
Matt Whitaker, director of integrated programs for Compassion & Choices, which lobbied heavily for the law, said he expects some patients will be able to find doctors willing to help them start the multistep process on the first day. “Everything that a physician needs is spelled out quite clearly in the law,” he said.
Karen Ali, general counsel for the New Jersey Hospital Association, agreed that the law itself is detailed enough that "there's no reason necessarily to wait for regulations."
However, there’s a good chance that cautious health systems and physicians will want to wait until all the i’s are dotted.
Carman Ciervo, chief physician executive at Jefferson Health in New Jersey, said his organization is preparing policy, with input from patients, to implement the law and is taking a “very measured and thoughtful approach.” It likely will wait until state regulations have been adopted — after a two-month comment period. “I would want the regulations in place,” he said. “This is a very sensitive situation and there’s going to be a lot of emotion around [it].”
Representatives of other health systems in South Jersey also said they’re still working on policies. Cooper University Health Care plans to have its policy in place by Aug. 1 or shortly thereafter, but would not say whether it would wait for adoption of regulations. AtlantiCare will not have all its planning done by Aug. 1. However, if patients want to participate before all the policy work is done, the health system will create a team to help them, said Marilouise Venditti, vice president and chief medical officer. “There is nothing that would get in the way of someone taking advantage of the law immediately,” she said.
Pennsylvania does not have an aid-in-dying law and is not currently considering one.
No matter when things start in New Jersey, individual doctors and pharmacists can choose not to participate in the law, so frail patients may face barriers finding two physicians willing to help.
Susan Boyce, 56, a Rumson woman who lives with less than a third of normal lung function because of a progressive lung disease, lobbied for the right to choose when to die even though she’s not sure she’ll want to take advantage of the law. She doubts she’ll want to use lethal medication until she is in hospice and out of options, until she is struggling for every breath. “We all want to live,” she said.
Asked why she wants the option, she said: “It’s control and also wanting to end needless suffering for myself and, by extension, others who love me.”
Michelle Micari, 62, an Aberdeen woman who has advanced breast cancer, also supported the bill. Despite the best efforts of doctors, she said, cancer deaths can be horrible. "I have seen so many of my friends die, and so many of them have not been pretty deaths," said Micari, an active member of Living Beyond Breast Cancer. "I want to control how I go. I don't want my family to be in anguish seeing how I've suffered."
On the other side, some people with disabilities have argued that the law could be turned against them. Some worried that unethical family members might pressure sick relatives to take deadly medications.
The Catholic Church for moral reasons opposes hastening death and will not allow doctors in any of its hospitals or health-care facilities to participate in the law, which it considers legalizing assisted suicide, said Pat Brannigan, executive director of the New Jersey Catholic Conference. Catholic ethical rules for health-care institutions specify that “Catholic health care institutions may never condone or participate in euthanasia in any way.” In South Jersey, the church rules will apply to facilities that were part of the Lourdes Health System, which was recently purchased by Virtua Health.
The New Jersey Hospital Association has offered well-attended training sessions on the new law to medical leaders without recommending whether they should participate. “At the end of the day, this is a legal option for individuals facing a terminal illness and we want to respect and honor that,” said Kerry McKean Kelly, the organization’s vice president for communications and member services.
Members of the New Jersey Medical Society, which, like the American Medical Association, officially opposes medical aid in dying, are split on the new law, said Larry Downs, chief executive officer. Some, he said, see the bill as a way to support and comfort patients at the end of life.
“The other side is ‘We need to preserve our role as healer. There’s nothing healing about doing this,’ ” said Downs, who is a lawyer. He said the organization hopes the new law will promote earlier and better conversations between patients and their doctors about prognosis, end-of-life goals, hospice, and palliative care.
No matter how this all settles out, no one will die under the provisions of the law on Aug. 1. The bill requires multiple doctor’s visits and counseling about other end-of-life alternatives such as palliative care and hospice before anyone can receive a prescription for fatal medications. There’s a waiting period and paperwork to fill out. In other states with similar laws, less than 1% of those who die acquire medication and not all of those actually use it. Some find it comforting just to know they could use the drugs if they wanted to.
If you or a family member is interested in pursuing aid in dying, here are some things you should know.
New Jersey residents with terminal illnesses who are in the last six months of life as determined by two doctors. The patient must be capable of making health-care decisions.
With an "attending physician," defined as a doctor with "primary responsibility" for your treatment and care.
No. All health-care providers can opt out of participating in aid in dying. Health systems may choose to help patients find doctors who are comfortable with the law. Ciervo said Jefferson is likely to take a “neutral” position on the law but thinks it is the health system’s responsibility to help patients find doctors willing to follow their requests.
Compassion & Choices will list health-care organizations, not individual doctors, that are supportive of the law.
A lot. To get the prescription, patients have to make two oral requests to their attending physician, at least 15 days apart. They also have to submit a written request that has been signed, dated, and witnessed by two people who can vouch that the patient is capable and acting voluntarily. At least one of them has to be someone who is not related to the patient and won’t benefit financially from the patient’s death. The prescription can’t be written until at least two days after the written request is received.
The doctor has to determine that the patient is a New Jersey resident, is terminally ill, and is able to make the decision. The doctor also has to discuss prognosis, the “risks and results” of the medication, and alternatives, such as palliative and hospice care. The attending doctor then refers the patient to a consulting doctor for a second opinion on prognosis and capacity. If the patient does not seem capable, the doctor is to refer the patient to a mental health professional. The doctor is also supposed to tell the patient not to take the medicine in public and to suggest it would be good to notify next of kin about this decision.
All these steps must be documented. Doctors and pharmacists have to report dispensing of medication for aid in dying and patient deaths to the state Health Department.
This is not clear. New Jersey doctors are still receiving training. A drug commonly used in other states, Seconal or secobarbital, is not currently available and had become very expensive. Doctors elsewhere now commonly prescribe a cocktail of medications to sedate patients and stop the heart: diazepam, digoxin, morphine sulfate, and propranolol (DDMP). These are commonly powdered and then compounded or mixed. Not every pharmacy will be able to fill these prescriptions and even the big chains don’t compound on site.
Crowley said the drugs typically take about an hour to work. "Literally, it's like dying in your sleep," he said. Compassion & Choices offers private doctor-to-doctor consultations about medications.
The medication must be taken by the patient. Typically, this means the powder is mixed in a relatively small amount of liquid and drunk. Compassion & Choices says some patients can drink the liquid through a straw and the drugs may be taken through a feeding tube if the patient is capable of pushing a button to start the machine.
Medicare does not pay for either the doctors’ visits or the medication. The compounded cocktail costs $400 to $600, Whitaker said. Medicaid, which is funded by states and the federal government, is not allowed to use federal funds to pay for visits or medication either. Some states have carved out state funds to help Medicaid patients. New Jersey has not done that.