On Jan. 1, 2019 鈥 just three months away 鈥 Hawaii鈥檚 will go into effect. The law authorizes medical aid in dying: giving Hawaii adults the option of obtaining a prescription for medication which we can choose to self-administer to achieve a peaceful death, should our suffering become unbearable. Many find a sense of relief and comfort just knowing this option is available.
Eligibility is governed by strict criteria: we must have a terminal diagnosis of six months or less, we must be mentally competent and under no coercion of any kind. Screenings by two doctors and a mental health professional are required.
Independent polls have shown widespread support for medical aid in dying in Hawaii going back 20 years, reflected in this year鈥檚 supermajority passage of the bill in both the House and the Senate.
I鈥檓 gratified that leaders in the health care industry and our government agencies are actively preparing now for the law to take effect. It is important that they have policies and procedures in place that are supportive of patients who make a request for this option and supportive of the doctors and medical staff who choose to honor their patient鈥檚 choices. Access to medical aid in dying is a right any of us who qualify can exercise should we choose to, but it will not be without careful consideration and dedicated effort 鈥 as it should it be.
If we seek medical aid in dying, we must be informed of the full range of options for end-of-life care, including hospice and palliative care services, which provide skillful management of pain and other end of life symptoms while maximizing the quality of life for our remaining days.
Studies show that hospice and palliative care use actually goes up in states that have authorized medical aid in dying. The options are not mutually exclusive. Data from Oregon shows that over 90 percent of people who use medical aid in dying are enrolled in hospice.
Advisory Group Formed
The Hawaii Department of Health has been very effective in getting the process ready for residents who might wish to use medical aid in dying starting Jan. 1. An advisory group has been formed to help the Department of Health organize the process so eligible residents will have appropriate, timely and seamless access to medical aid in dying if they so choose and meet the strict criteria.
I am honored to be a part of this advisory group as a non-medical representative of the community. One of my roles is to report back to the group the concerns and questions that Hawaii residents have about medical aid in dying.
I have had conversations with many people. Several have expressed concerns that their request to use medical aid in dying, even if approved, might be delayed. They worry that as their disease progresses and their ability to function lessens, delays in the medical aid-in-dying process will take away their choice, and that they will find the option they were counting on had evaporated because of these delays. Some were concerned that well-meaning medical professionals might try to 鈥渢alk them out鈥 of their choice to use medical aid in dying.
We can only imagine how this could be devastating to patients and their families who are looking for a sense of comfort, choice and control in their final time of life. They were expecting to choose when, where and how they would die, but instead this choice is taken away from them. The intent of the Our Choice, Our Act will not be realized for these people.
Others have similar concerns. They hope that if their doctor declines to participate in the process, there will be a timely referral made to another physician who will work with the patient following the procedures set out in the law. With a potential six months or less to live, it鈥檚 important that hospitals and clinics create internal referral procedures, so the wishes of the patient are honored and not delayed. For a patient with a terminal prognosis, the clock is ticking.
The advisory group also has representatives from the medical community and hospice organizations. The meetings have been productive. The issues of medical provider training and streamlining the process of obtaining a prescription are being thoroughly discussed. The Hawaii Department of Health is using this input to ensure access to medical aid in dying is available on Jan. 1.
Many patients and their families were helped by hospice. But many wanted another choice.
It is essential that all of us have a conversation with our families and our medical provider now about our end-of-life options. Even though we may be far from needing end-of-life help, including medical aid in dying, it is important to use our autonomy to express our wishes and concerns. We should have that conversation now. It is important for our doctors and families to discuss our values, our moral compass and priorities about our end-of-life care. We need to know if our doctor would honor our choices regarding medical aid in dying and where our family stands on the issue.
These meaningful doctor-patient discussions often become the basis for a deeper understanding of what we want at the end of life, which results in less fear of death and greater enjoyment of the life we have been given. Many of us聽have long-term relationships with our doctors, and worry about how they will be affected by these conversations. Open and trustful discussions should not threaten the bonds between patient and doctor.
You can visit for information on the basics of the Our Care, Our Choice Act and resources on how to talk to your doctor about this issue. This same website has valuable resources on medical aid in dying for medical professionals.
In my books, 鈥淭hose Who Care鈥 and 鈥淎 Beauty Born of Suffering,鈥 I tell the stories of caregivers and people in the last year of life. Many died before the death with dignity law came into place in Oregon. Many patients and their families were helped by hospice. But many wanted another choice. After the law came into effect, I witnessed miracles 鈥 those who chose medical aid in dying, surrounded by loved ones, able to embrace both life and death in their final days.
Now Hawaii must make sure there is timely access to the process that will bring peace of mind and a sense of comfort, a process to ease the suffering of those who want access to this compassionate choice.
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