How do we improve DWD laws? – Part 1

Any discussion of Death With Dignity (DWD) and a Death With Dignity Act (DWDA) must begin by articulating the goals of DWD–what I prefer to call a humane death. The foremost goal for the Final Exit Network (FEN) is clear:

Mentally competent adults who suffer from a terminal illness, from intractable physical pain, or from a constellation of chronic or progressive physical disabilities, or who face an impending loss of autonomy and selfhood through dementia, have a basic human right to choose to end their lives when they judge their quality of life to be unacceptable. – From FEN’s Our Guiding Principles

Oregon’s Death With Dignity Act (DWDA), implemented in 1998, was a monumental step forward in pursuing this primary goal. But its advocates realized that, out of political necessity, it was not a universally applicable law, covering everyone in need. And the DWDA did not assure that all people have excellent medical care to meet their needs, though Oregon did dramatically improve palliative care in the state, diminishing the need for many people to make use of the DWDA.

In light of the great strides made in a very short time in Canada to provide DWD, and the expansion of DWD into six other US jurisdictions (Washington, Montana by judicial decision, Vermont, District of Columbia, California, and Colorado), it may be time to seriously discuss how the DWD systems in the US can be improved.

From the time Oregon’s Death With Dignity Act (DWDA) was implemented, and perhaps before, some people have been concerned that it was too narrow in scope. That is, the DWDA was too restrictive: it requires

– a six-month terminal diagnosis
– two doctors to be involved (a prescribing physician, who writes a prescription for the lethal medication, and a consulting physician)
– two oral requests for help in dying that are made at least 15 days apart
– a written request to the patient’s physician that is witnessed by two people
– a diagnosis and prognosis by the prescribing physician and confirmation by the consulting physician
– determinations by both physicians that the patient has the capacity to make health care decisions
– a psychological examination if either physician believes the patient’s judgment is impaired by a psychiatric or psychological disorder
– information from the prescribing physician to inform the patient of feasible alternatives to DWDA, including comfort care, hospice care, and pain control
– the prescribing physician to request that the patient notify his or her next-of-kin of the prescription request (but notification cannot be required)
– that pharmacists be informed of the prescribed medication’s intended use (so that they can refuse to fill the prescription if they do not wish to participate in the process)

Oregon’s DWDA also includes several reporting requirements that allow the Oregon Health Authority to monitor implementation of the law. These reports provide useful data to help us understand how the law is used and its limitations.

Proponents of Oregon’s DWDA believed that the restrictions and precautions included in the Act were necessary to assure that vulnerable people were protected from an unwanted premature death, and so that the Act would receive support from the public, as well as the medical community. (Some believe also that the precautions are necessary to get the approval of legislators in those jurisdictions where a DWDA might be adopted legislatively.) Now that we have seen that the DWDA has worked well for twenty years, without major mistakes that harmed vulnerable people, it is time to assess whether changes to the Act can be made that would make available to others the limited choice now available to a few terminally ill patients, who are close to death.

For example, many people with irreversible illnesses face suffering during the late stages of their illnesses or do not wish to live beyond a certain point based on their own values. Amyotrophic lateral sclerosis (ALS), widely known as Lou Gehrig’s disease, is described by the ALS Association (ALSA) as “a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.”

Six thousand people are diagnosed with the disease each year in the US, with about 20,000 ALS patients alive at any one time. ALSA reports, “Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.” A few people, especially those with a rare early-onset slow-progressing form of the disease, such as physicist Stephen Hawking, are able to live longer and maintain more functional ability, especially with excellent clinical management interventions, technological innovations, and new drug therapies.

As Ted Ballou described in an earlier post, “Typical early symptoms may include twitches in limbs or tongue, muscle cramping and weakness, slurred speech, or difficulty chewing or swallowing. Muscle weakness and atrophy spread to many body areas as the disease progresses, eventually making controlled movement impossible. Disuse of paralyzed muscles leads to painful cramps; loss of tongue and jaw control interferes with speech, and problems taking in food cause choking and malnutrition. . . . Prognosis is death by asphyxiation, when the muscles required for respiration succumb to the disease, on average within three years of diagnosis.”

Faced with such a scenario, I would want the ability to hasten my death before I had to suffer the frightening, debilitating, and painful effects of ALS. That would be my choice, but may not be the choice of other ALS sufferers. What I am suggesting is that if I had ALS, I would want the right to make that choice. Right now, no one in Oregon, Washington, Vermont, the District of Columbia, California, Colorado, or Montana has an effective right to obtain a prescription once their ability to swallow is compromised or once they lose control of their hands and arms to the extent they cannot administer the medication for themselves. (Montana’s court decision also permits only a self-administered drug for hastening one’s death.)

And other medical conditions present problems similar to those faced by ALS sufferers: Parkinson’s Disease, Alzheimer’s Disease, other forms of dementia, Huntington’s Disease, multiple sclerosis, muscular dystrophy, emphysema, congestive heart failure, stroke, AIDS, and other lesser-known but serious, frequently lengthy ailments. Many people with these conditions face an agonizing period of unwanted suffering, inhumane conditions, or loss of dignity that they don’t want to live through or experience. Such people should have the same choice as a cancer patient with six months or less to live, which has always been an arbitrary and imprecise standard, though it has served the politics of DWD well.

In addition to eliminating the “terminal illness with six months or less to live” requirement, I would allow patients with the conditions described above, or any similarly irreversible condition that will lead eventually to their death, to choose to use the DWDA to hasten their death at a time of their choosing.

However, for ALS sufferers to make the choice that a DWDA allows, they have to do so at a sufficiently early stage of the disease when they still have the ability to self-administer the drug that will hasten their death. This may mean that they lose their lives much earlier than they may want to, at a time when they are still able to enjoy family relationships and lead otherwise meaningful lives.

Part 2 will continue this discussion and address additional aspects of DWDAs that could be changed to afford greater liberty for all who suffer from illness or disease from which they want to be released.