To be or not to be: Should we have the choice? Euthanasia - Belgium Lori Cummings, N4 University of Kansas-Medical Center, School of Nursing

City and Country Visited The program was located in Ghent, Belgium, but visited other cities, such as Bruges, Oostend, and Antwerp

Learning Objectives of Attending the Program Develop an understanding of Belgium’s healthcare system Gain a sense of palliative care/end-of-life care in Belgium and how it compares to the United States Appreciate and welcome the differences of the cultural in Belgium and of the students from a variety of countries who are participating in the program of Interdisciplinary Programme on Palliative and End-of-Life Care (IPPE) Obtain a better understanding of the procedure euthanasia and the process Keeping an open mind and respect for different perceptions and ideas

Background Information Located in the continent of Europe, it shares borders with France, Germany, Luxembourg, the North Sea and the Netherlands 11.4 million population (Health Data, 2016-a) How much is spent on health? Belgium 2016: $53.4 Billion (Health Data, 2016-a) $41.6 billion on government health spending $9.5 billion out-of-pocket spending $2.3 billion prepaid private spending United States 2016: $3.0 Trillion (Health Data, 2016-b) $1.5 trillion on government health spending $337.4 billion out-of-pocket spending $1.1 trillion prepaid private spending

Background Information Euthanasia: A physician, by law, is allowed to administer a lethal dose of medication on a voluntary basis to the patient (World RtD., n.d.). Belgium Legalized in 2002 for adults and emancipated minors (Patients Rights Council, 2013). Was the second country to adopt this procedure behind the Netherlands (The Guardian, 2014). In 2014, Belgium became the first country to adopt euthanasia for any age, including children, with an “incurable” or “untreatable” illness (ProCon, 2013). Physician-Assisted Suicide: A physician can provide a prescription of a lethal dose of medication to a patient under voluntary terms. The physician does not administer the medication (World RtD, n.d.). United States 1994 – Oregon passed the Death with Dignity Act allowing physician-assisted suicide (ProCon, 2013). As of today, Oregon (1994/1997), Washington (2008), Vermont (2013), Colorado (2016), California (2016) and Washington D.C. (2017) has legalized physician-assisted suicide. One must be an adult and a state resident. The patient must be competent and voluntarily request this and has been diagnosed with a terminal illness that will only allow them to live for 6 months or shorter. Death with Dignity, n.d.).

Description of Study Site – AZ Sint-Lucas Palliative Care Unit (End-of-Life). Residents come to this unit once home care is no longer an option. On average, the stay is 3 weeks until their passing. Non-invasive medical care. The unit does not monitor vitals but may use IVs to increase the quality of life. Provides animal therapy.

Description of Project Site – De Refuge My group went to the day center of De Refuge. It is also a long-term care facility. Our group engaged the visitors of the day center that were both dementia and non- dementia patients. Visitors, 65 years old and up, within in the community are able to come Monday through Friday with transportation included, if needed. They provide a wide activities such as art and music therapy, day trips, massage and interaction.

Description of Topic – Thought Provoking Scenario There are two people, Taylor and Jaime, suffering from an “unbearable” and “untreatable” psychiatric disorder: Depression with a personality disorder. Taylor lives in Kansas City, KS while Jaime lives in Ghent Belgium. Both people have suffered from mental illnesses since they were 14 years old and are now 28 years old.  They both come from a decent family and have friends. They have sought psychological and psychiatric treatment over the years. They have tried a variety of medications and medication combinations to treat the psychiatric disorders. Suicide has been a constant thought and an attempt was made by both parties that lead them to becoming patients in a psychiatric institution. Their family and friends do their best to continue to be supportive but don’t know what else they can do to help.     Weeks after getting out of the psychiatric institution, Taylor commits suicide by a drug overdose.  The family is devastated but is not completely shocked. However, friends and family thought they were doing better after getting out and were unable to see Taylor’s continuous mental struggle (Cummings, 2018, p. 1).   Jaime discusses options of euthanasia while a patient inside the institution.  Jaime is seen by a team of doctors and nurses as well as psychiatry. They look into the long history of mental illness and must decide if this person meets the requirements of euthanasia.  Three doctors must sign off on this and one doctor is a psychiatrist (this process can take up to a year or more at times, but for the purpose of this situation it will be a matter of weeks). Several weeks after leaving the institution, Jaime gets the approval of euthanasia.  Family and friends do not agree with this decision but choose to support with reluctance (Cummings, 2018, p. 1). Two Options:    The date is approaching and Jaime decides not to go through with euthanasia in hopes of finding a medical plan and treatment to combat the mental illnesses. With contemplating the process of euthanasia, it exposed Jaime to options and multiple doctors that sought to find different methods of treatment than the previous interventions utilized to treat Jamie’s disorders that were unsuccessful (Cummings, 2018, p. 1). A month goes by and Jaime has gotten all of her affairs in order.  There is a choice to have a lethal injection or drink a liquid that will induce death.  On the day of the procedure, family and friends surround Jamie. The family is in mourning after Jaime’s passing but is grateful they were able to walk the full path and be there at the passing (Cummings, 2018, p. 2).

Description of Topic – Scenario Questions TO CONSIDER   Should a person have the right to end their life in a such a manner as euthanasia? (Cummings, 2018, p. 2). 2. In Belgium, euthanasia is legal for psychiatric disorders. a. Do you agree or disagree with this and why? b. Should it only be legal for chronic or terminal (physical) illnesses? (Cummings, 2018, p. 2). 3. Could the option of euthanasia for psychiatric disorders decrease suicides or provide more outlets and resources for people contemplating suicide? (Cummings, 2018, p. 2). 4. How do you feel about euthanasia being legal in the United States? a. Currently, physician-assisted suicide is legal in the following states: Washington D.C., California, Colorado, Oregon, Vermont, and Washington (Cummings, 2018, p. 2).

Euthanasia: Individual Interventions The process an individual must go through in order to receive euthanasia Belgium Law: the willful life-terminating actions by someone else than the person involved but on their request (C. De Bosschere, personal communication, January 30, 2018). Patient must consult with their physician or have a DNR with that indicates the desire for euthanasia due to situational circumstances (C. De Bosschere, personal communication, January 30, 2018). Patient must be competent (C. De Bosschere, personal communication, January 30, 2018). Must consult with a team of the consists of specialists, a psychiatrist, and independent doctor other than the patient’s primary care physician. Three physicians must sign off on the approval (C. De Bosschere, personal communication, January 30, 2018). The request must be in writing and the desire must be repeated (C. De Bosschere, personal communication, January 30, 2018). This process may take up to a minimum of a month to a year dependent on the terms of the illness (C. De Bosschere, personal communication, January 30, 2018).

Euthanasia: Community Interventions With euthanasia being legal in Belgium, whether you agree with it or not, may create a conversation for this topic that is taboo in other cultures (C. De Bosschere, personal communication, January 30, 2018). Education provided by physicians and other healthcare professionals concerning the topic of euthanasia as well as other options, such as palliative care, pain management, controlled sedation, and etc. (C. De Bosschere, personal communication, January 30, 2018). The process of euthanasia tries to incorporate the patient’s family and friends if the patient wishes and provides education as well as support before, during and after the procedure (C. De Bosschere, personal communication, January 30, 2018).

Euthanasia: System Level Interventions - Laws No physician or medical professional is obligated to perform or take part in the process of euthanasia (C. De Bosschere, personal communication, January 30, 2018). In 2014, euthanasia was deemed legal for anyone of any age that fits the criteria of having an “untreatable” and “uncurbable” illness. This may include chronic, terminal and psychiatric illnesses (C. De Bosschere, personal communication, January 30, 2018). A DNR in Belgium is good for up to five years. With a DNR, one can be granted euthanasia is a unfortunate accident happens and are in a coma (C. De Bosschere, personal communication, January 30, 2018). The death certificate concludes the death’s causality was natural and not by euthanasia (C. De Bosschere, personal communication, January 30, 2018).

Conclusions/Suggestions Whether one agrees with the procedure of euthanasia, I believe in the process of dying with dignity and autonomy. Not everyone in Belgium completely agreed with this process, but overall the majority found it comforting to have the choice. We all have a death sentence called life. This is the one situation that is unavoidable. I feel we, as healthcare professionals, need to begin the topic of death and the desires of the patient far sooner rather than always trying to have this “fix-it” mentality. “Fatally necessary, perpetually imminent, intimately untransferable, lonely ... what we know about the death is very true but does not turn it more familiar not less incomprehensible.” F.Savater

Most Profound Clinical Experience Visiting my project site at De Refuse and engaging with the day visitors was beyond impactful. Our team’s expected outcomes was to engage the day visitors physically and mentally, but we achieved so much more which amounted to connection. Going to another day center and taking dance lessons with the visitors. Presentation from the Community Health Center Discussion Panel on the topic of Euthanasia Learning about homeopathic therapies: Reiki, Aroma Therapy, Massage and etc.

Most Profound Cultural Experiences Interacting with the variety of people and cultures who attended this program Having a Belgium Buddy and being able to share experiences and differences Card Game – There were 7 tables and each table had a set of different rules (you didn’t know that) and you have to find a way to communicate without language The Light Festival that happens only every 3 years in Ghent Figuring out the transportation system

References Cummings, L. (2018). Cultural differences, opinions, and ethical issues of euthanasia. Unpublished manuscript, University of Kansas – Medical Center. Death with Dignity. (n.d.). Death with dignity acts. Retrieved from https://www.deathwithdignity.org/learn/death-with-dignity-acts/ Health Data. (2016-a). Belgium. Retrieved from http://www.healthdata.org/belgium Health Data. (2016-b). United States. Retrieved from http://www.healthdata.org/united-states Patients Rights Council. (2013). Belgium. http://www.patientsrightscouncil.org/site/belgium/ ProCon. (2013). Euthanasia. https://euthanasia.procon.org/view.timeline.php?timelineID=000022#2000-present The Guardian. (2014). Assisted dying. Retrieved from https://www.theguardian.com/society/2014/jul/17/euthanasia-assisted-suicide-laws-world World RtD. (n.d.). Is physician-assisted suicide the same as euthanasia?. Retrieved from https://www.worldrtd.net/qanda/physician-assisted-suicide- same-euthanasia