The balancing ‘Act’ on end-of-life laws in NC
“I always felt like we were going to stop her from breathing,” Moore County resident H.M. said about the prescribed combination of pain and psychotropic medications when caring for her terminally ill mother.
After years of vascular disease, heart disease and COPD, their mother had taken a fall that led to an amputated leg and her health deteriorated. She could no longer stand or walk or eat solids or have bowel movements on her own. Hospice prescribed psychotropic medicines for insomnia and night hallucinations. H.M., a nurse since 2003, taught her brother how to help care for her.
During the last two months, their mother was in and out of consciousness and only when she awoke in agony did they know to give her more pain medicine.
“This took a huge mental toll on me. I felt like if she did die from the meds it would be natural,” H.M. said, “Now with COVID, people are having to decide to withdrawal care. I can’t imagine as that is so unexpected.”
Next to personal guilt and grief is legal grief.
The mindset of owning our own bodies includes death but that does not give any individual the power to request and receive Aid-in-Dying (AID) for people in several states, like North Carolina. But is that power already present?
Physician-assisted-suicide (PAS) in North Carolina may already be legal according to the founder of End of Life Liberty Project (ELLP), Kathryn L. Tucker. Her 2019 article in North Carolina Law Review states that mentally competent terminally ill patients may request and receive AID from physicians without risk of “viable criminal or disciplinary action. The United States Supreme Court has ruled that physicians cannot be punished for prescribing medication for AID under the Controlled Substances Act.”
Under the Pain Relief Promotion Act of 2000, pain medications, are prescribed for the terminally ill and administered at will and recorded by care providers. Care providers include Hospice workers, physicians, registered nurses and family members.
These pain medications are typically opioids and physicians and trained professionals know about the “double effect.” Opioids relieve pain and their unintended consequence is depressing the respiratory system and hastening death according to Dr. Aditi Sethi-Brown, a palliative care physician who embraces the sacredness of death with music.
“Individuals with a terminal illness often resort to violent means to end their lives in the face of their perceived unbearable suffering. This can be traumatic for all involved, the individual and their surviving loved ones,” Sethi-Brown said.
“Trust me, my mother was living in hell here on Earth at the end,” H.M. said, “So were we. I believe if the people actually making the laws had to live through it they would come up with some way to end the suffering.”
Retired Army Medic, Angela Miller of Moore County has seen end-of-life suffering in the field and in her family. Miller says she believes the pain medication is there to serve its purpose but has restraints.
“Keeping a patient comfortable until passing should be the only proper way of caring for a patient. Plus, if you are a person of faith in most religions suicide prevents you from going to heaven,” Miller said.
National Palliative Care Research Center Director Dr. Sean Morrison said “pain relief should not be conflated with physician assisted suicide. They are different interventions with different intents.”
Bear in mind, the H.R. 1003 Assisted Suicide Funding Restriction Act of 1997 prohibits federal funding for Social Security Acts, Medicare, Medicaid, Public Health Services Act, the Indian Health Care Improvement Act, federal employees, the military, veterans, Peace Corps personnel and federal prisoners — to assist with death of any individual.
The Pain Relief Promotion Act of 2000, a federal law, acts as a safety net for physicians balancing end-of-life care. Pain medications are funded through many federal programs and that balances this act.
Sethi-Brown said that in North Carolina, physicians can provide medical aid in dying because “there are no permissive or prohibitive statues.”
But after nearly 20 years after the pain act’s inception, the North Carolina General Assembly considered 2019–2020s HB879, the North Carolina End of Life Option Act which would have allowed terminally ill patients the choice of specific life-ending medicines. This bill died.
The Pain Relief Promotion Act of 2000 defines “pain management and palliative care” as certain types of actions, the purpose of which is to diagnose and alleviate pain and other distressing signs and symptoms and to enhance the quality of life, not to hasten or postpone death.”
There is concern that bills similar to HB879 would result in an expensive end-of-life option serving a fraction of society — the elite, because the H.R. 1003 Assisted Suicide Funding Restriction Act of 1997 prohibits Federal funding.
Morrison said he did not support HB879 “when palliative care is available to all who can benefit from it and when the average physician is capable of having informed goals of care discussions, my mind might change. At the present time, PAS is a cheap and easy alternative to high quality palliative care and communication.”
Dying Right In North Carolina (DRNC) Legislative update on Dec. 1, 2020 on You Tube.
North Carolina’s struggle for balancing end-of-life care under legislation weighs heavily on caregivers on the forefront and lawmakers on the hill.
North Carolina’s General Assembly is back in session as of Jan. 27, 2021 and when a new PAS bill is introduced, the threat of unbalanced deaths will rise again.
Rep. Pricey Harrison, (D) said in a video on Dying Right in North Carolina, an advocacy group in favor of Medical Aid In Dying (MAID) that she “will be filing again in January.”
The DRNC video shares that most bills fail several times before passing.
The DRNC also states that it does not believe the PAS bill is a partisan issue.
However, the primary supporter for the most recent bill was Rep. Fisher (D) and the North Carolina General Assembly lists nine democrats and only three republican supporters. With Biden leading the Democrat Party, the balancing act on end-of-life care is blue.
PAS is legal in eight states and should North Carolina be next on the list, there will be only a fraction of society to benefit unless H.R. 1003 is repealed. The rising cost and scarcity of comfort care end-of-life drugs is a major concern. The cost was $200 in 2015. In 2020, the same drugs are $3,500. That is a lot to balance, unless wealthy.
That said, it may be wise to consider not fixing something if it is not entirely broken.
