Louis Kafka, a Democratic state representative from Stoughton
Several years ago, I was contacted by a constituent who was dying from stomach cancer. His condition was accelerated due to blood clots, which prevented him from continuing his chemotherapy treatments. There was no cure; he was going to die, but he wanted the option to do it on his terms.
My bill, “An Act Affirming a Terminally Ill Patient’s Right to Compassionate Aid in Dying,” will allow patients that option while also protecting their rights. The legislation is filled with safeguards to ensure it is an informed decision and their decision. For instance, patients must have a terminal disease and the ability to make health care decisions, and request the medication themselves. They must be informed of their diagnosis, prognosis, potential risks of the medication, the probable result of taking the medication, and alternatives like comfort care, hospice, and pain control. Their request must be approved by two physicians, and they must see a councilor to determine if they’re suffering from a psychiatric disorder, psychological disorder, or depression.
Additionally, any such request must be witnessed by two individuals. The witnesses must attest that they believe the patient is capable of making this decision, and that they’re acting voluntarily. One witness must be someone unrelated to the patient who is not entitled to any portion of the patient’s estate, doesn’t own or work for the health care facility involved in the request, and isn’t the patient’s attending physician.
At any time during this process the patient has the right to rescind his or her request. Even after patients receive the medication, they need not take it. The US Census Bureau estimates that the population of the State of Oregon in 2014 was 3,970,239. Since a similar law passed there in 1997, there’s been 1,327 prescriptions written through 2014, and only 859 patients have chosen to take the medication.
My constituent passed on Oct. 22, 2009. I don’t know if he would have chosen to end his suffering earlier, but it’s a choice he and many others should have had. We can’t sit in judgment of those in such pain; everyone must be allowed to make their own choices in keeping with their own beliefs.
Brenda Karkos, director of Rockland-based Hospice of the South Shore, a program of South Shore Hospital in Weymouth
Rather than allowing doctors to assist a patient in dying, we should focus on improving early access to palliative care and hospice programs. Patients with terminal illnesses are successfully and compassionately cared for through such programs. Hospice is a holistic, multidisciplinary approach to caring for those facing the last six months of life. The basic tenets are to aggressively address physical symptoms such as pain or nausea, and provide comfort measures, while offering social and spiritual support to the whole family. Palliative care comes much earlier in a patient’s experience with a serious illness and is focused on the goals that are most important to them.
Although access to hospice is readily available, too many still do not seek services until late in their disease or not at all. In 2013, only 42.5 percent of Medicare beneficiaries died within the care of a hospice program. Although the Medicare hospice benefit entitles patients to care in the last six months of life, the average patient in Massachusetts utilizes hospice for only two months. In many areas of the state, such as here on the South Shore, time spent on hospice is even less.
Since hospice was first introduced in Massachusetts in the 1980s, more open discussions with patients and providers and a greater clinical focus have led to significant improvements in end-of-life attitudes and care. Better technology, advances in medication, and improved care delivery have made it possible for most patients to stay in a place of their choosing, surrounded by family and friends. A 2005 survey showed Medicare-aged individuals reported that, in the event of a hypothetical terminal illness, 86 percent would prefer to die at home; only 9 percent would prefer to die in the hospital.
Some life-prolonging interventions can actually add suffering or become burdensome. However, early discussions and advanced health care planning can help patients express what treatments they do want, and available tools to ease pain and distress can result in a peaceful end. Palliative care and earlier use of hospice services help alleviate patient and family fears and add dignity and quality of life, even in the midst of a terminal illness.
As told to Globe Correspondent John Laidler. He can be reached at firstname.lastname@example.org