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In This Nursing Home I Am Not Allowed to Die

The debate over euthanasia and physician-assisted suicide. Mentalizing different perspectives on the matter.


Growing up as a child in the Netherlands, I surrounded myself with as many animals as I could. I would walk dogs, ride horses, milk cows, play with cats, you name it. Most of these animals didn’t belong to me, so I had no say regarding their well-being. Whenever an animal became seriously ill or suffered a severe injury, the moral stance of the owner was to alleviate the animal’s suffering and humanely expedite its end-of-life transition.


During that same period of my life my grandfather got seriously ill and was bedridden for several years. One day, while I was playing in my grandparents’ living room, I overheard my mother saying to another family member,


“Everyday, dad is praying to God, asking the Lord to let him die so that he doesn’t need to suffer anymore.”


Being a young child, I didn’t understand why the doctor wasn’t helping my grandfather with his journey to death like the veterinarian normally did for animals who found themselves in the same unfortunate state.


When my grandfather died more than a year later, I wasn’t overly sad. On the contrary, I felt relieved that the God he prayed to had finally granted his wish and ended his suffering.


In April of 2002, more than two decades after my grandfather’s death, the Dutch Euthanasia Act came into force. The law was officially named the Termination of Life on Request and Assisted Suicide (Review Procedures) Act. The groundwork for the new Act was laid in 1973, after the first court case in The Netherlands to deal with euthanasia was decided. In that case, the Court held that it was no longer the duty of Dutch physicians to use all medical means available to prolong a patient’s life under all circumstances. (1)


When the Act came into force it spawned fierce debates at all levels of Dutch society. To this day, the Act continues to raise new questions and discussions in connection with its ethics and application.


In August last year, I received a message from my cousin informing me that our aunt, who lived in Amsterdam, had taken a bad fall and was being transported to the hospital. The doctors determined that a bacterial infection and resulting muscle weakness were to blame for the fall. She also suffered with symptoms from advanced Parkinson’s disease.


It took the doctors a couple of weeks to get the bacterial infection under control. Still, my aunt was in no condition to return to the independent lifestyle of her apartment, largely due to the rapid progression of her Parkinson’s. She could barely support her own weight, and she had difficulty swallowing food without choking. The medical staff eventually made arrangements to have her placed in a nursing home.


My aunt was livid that she was being forced to surrender her independence. She wanted desperately to return to her apartment, her cat and the many books she had surrounded herself with in the 40 plus years that she had lived there. Soon after she was moved to the nursing home, my aunt and I resumed our regular communications through WhatsApp and phone calls, as we had done before her fall. “Anique,” she said during one of our phone conversations,


“I would like your opinion about the following … I am seriously considering initiating a euthanasia assessment procedure. What is your perspective on assisted suicide?”


I sat silently on the other end of the call as I tried to process the weightiness of her question. I reflected on the feelings I had and the beliefs I held regarding euthanasia. It was the first time in my life that I had been confronted with such a question from someone who was seriously contemplating an end-of-life decision, let alone someone who was so near and dear to my heart.


Being a psychologist, I first asked her if she had considered that she might be suffering from depression. With everything she had been through, situational depression would have been entirely understandable. I also explained to her that depressive symptoms are common in people with Parkinson’s disease due to changes in brain chemistry. Moreover, I explained that anger is often overlooked as a symptom of depression.


My aunt assured me that her physician had already discussed these concerns with her. She explained to me that she didn’t feel depressed, and that the bouts of anger were attributable to her sense of having lost control over her own life. My aunt had always possessed an acute understanding of the mind, especially her own, so I trusted her self-diagnosis. Eventually, I responded that while her passing would sadden me deeply, I understood that she should be the one to chart her own journey to death. I would support her in her decision, whatever she chose to do.


Two weeks passed before I heard from my aunt again. During our phone call, she was notably frustrated. Although her situation made her eligible to request the euthanasia process, she couldn’t find a single doctor who was willing to provide her with the necessary medical assistance. She started to rant about the doctors, her caregivers and the other residents at the nursing home. She wasn’t able to do much on her own anymore. She could barely eat, she couldn’t watch TV, she couldn’t get out of bed to use the toilet. She couldn’t even read anymore, which had always been her favorite pastime. She was in constant pain, which made it hard for her to sleep. She wanted to die.


I expressed my concern that it would be sad for her to spend her final days in a state of anger and frustration, regardless of how understandable her feelings were. I asked her if there wasn’t something she could do to regain a sense of control over her life. She told me that she had actually already been thinking about how to do just that.


Two weeks later I received a message from my aunt that she had dictated an op-ed article that my cousin had carefully transcribed. They sent it to three major Dutch newspapers in hopes that one of them would publish the piece and prompt a public discussion about euthanasia. The NRC decided to publish it. They dedicated the entire front page of the “Opinie & Debat” (Opinion & Debate) section of their weekend edition. Our aunt’s op-ed was even mentioned on the front page of the paper. A translated version of the article appears below the photograph of both pages.



In this nursing home I am not allowed to die


She had a wonderful life, but now she’s in a nursing home and can’t get euthanasia.


Maybe I will be dead when this appears in the paper. I am the one who went through this and believe me, you will be going through it too. I want this to change. I am on this path myself, seeing it and living it.


A decision is made for you that you can no longer go home, you have to go to a nursing home. Hopefully it will be better there than in the hospital and maybe there they will want to help me with my euthanasia wish. At least I get my own room with privacy.


You are brought by ambulance, arrive in a bare room and are put in your bed by paramedics. Everybody leaves and then you lie there alone, waiting and waiting…. You have nothing and you can’t do anything.


Finally someone comes. It’s a doctor of the house. “I’ve come to meet you.” Two nurses join and they would like you to tell them why you are there. I say, “I want euthanasia.” “We don’t do that, then we have to refer you, but we hope you will enjoy yourself and have a good time here. In a wheelchair you can still do all sorts of things.”


I am not being listened to. I don’t want to be in a wheelchair. I don’t want to sit at a table with a paper placemat among old people in wheelchairs. I don’t want to be here. You are put in a wheelchair anyway and then suddenly you are alone in your room with no one coming to see you. You can’t even move your wheelchair an inch. When someone finally comes after four hours and you say something about it the answer is: “That doesn’t happen here.”


I am not a thing in a bed, I am a human being. When are you still human in a nursing home? When I was still at home, I didn’t want to live either. Parkinson’s made me disabled. I used to go to the ballet, the theater, museums. I read books. Now I can’t do anything. I stopped eating at home and soon got an infection. When I didn’t open the door, the neighbor raised the alarm. And I was picked up, saved with the best of intentions.


If only they had left me, I would not be alive now. The man who goes to work in The Hague with an apple on his bicycle [referring to prime minister Mark Rutte] has no idea that someone somewhere has already been lying in a dirty diaper for 24 hours, with a very sore tailbone, waiting to be changed. Others decide what is good for her. I want to make my own choices. I am who I am and I don’t want to live anymore.


My disease is progressive and the environment I am in is not my environment. I don’t want to be here. I have had a wonderful life, my life is complete and I look forward to my death. I think the next generation also wants to decide for themselves what they want to do with their lives when they are in a similar situation.


It has been said so many times, but I am experiencing it now. Give nursing homes more staff and better care for residents. If someone is deliberately asking for euthanasia, they should be listened to. The doctors who make it possible must be better protected.


Put those who sue these doctors for this behind bars. Make euthanasia possible for everyone. I think the next generation wants this. People who think this is murder, tell me: what is murder?


 

Soon after the article appeared in the paper, doctors came forward who were willing to provide her with the necessary aid. She enjoyed her final days having family and friends coming out to visit her. My sister and I were able to spend a long weekend with her. My cousin celebrated my aunts last night with her, decorating her room with Christmas lights and candles, opening a bottle of champagne, (though my aunt could only take some small sips), while looking at pictures and reminiscing about times shared.


The following day, around 11 o’ clock, after listening to a couple of her favorite songs, one of the doctors asked if she was ready. Without any hesitation she said, “Yes, please start the procedure.” Witnesses, including my cousin, saw her gazing away into the distance, and a calm expression of total acceptance fell like a veil over her face. Slowly, she set upon the last leg of her journey to death, in the way, and at the time, she wanted it to happen.


The responses to the article were overwhelming, and mostly positive. Some people pushed back on the idea that the healthcare system in the Netherlands could, at times, fail to such an extent. Others were uncomfortable with the topic of euthanasia. But most people acknowledged that euthanasia should be an option whenever a person is suffering and only death will bring them relief.


The development of medical measures to prolong people’s lives has seen incredible progress over the last several decades. Prolonging a life does not necessarily mean that the person’s quality of life is taken into account, however. Nowadays, many people are forced to suffer much longer than necessary. Advances in life prolonging medical care are increasingly burdening us with the heavy responsibility of life and death decisions (“playing God”). The question of what constitutes too much suffering is increasingly based upon more subjective forms of reasoning (psychological pain, dying with dignity) than upon objective physical limitations (inability to eat, unbearable physical pain).


When we talk about assisted dying, what are we actually referring to? The terminology can be a little confusing. Physician-assisted dying (PAD) is an umbrella term that includes euthanasia and physician-assisted suicide (PAS). While euthanasia refers to the medical procedure whereby the physician provides the life-ending medical assistance upon the patient’s request, the term physician-assisted suicide involves the patient’s use of doctor-prescribed medication to carry out an end-of-life decision. Both of these practices are distinct from the withdrawal or withholding of life-sustaining treatment. (3)


Although, like my aunt, I am a proponent of the right to decide over one’s own journey to death, I do acknowledge that there are also rational arguments against it. From the perspectives of the different people involved in the dying process, the following arguments have been made:


Patient: I want to have control over the time and manner of my own death


O’Rourke and colleagues indicate in their article (2017) (3) that “it is much less about physical pain and suffering than it is about the desire to have the control to end one’s life.” They cited a similar research report by Loggers and colleagues (2013) (4) that involved terminally ill cancer patients, which mentioned the following: “The most common reasons for participation [in accelerated end-of-life procedures] were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%), and loss of dignity (75.0%).”


A study done by Seale and Addington-Hall in 1994 (5) indicated that when pain is excruciating and continuous, it tends to become the main reason to request PAD. The researchers found that social class, place of residence and strength and type of religion were largely insignificant. A more recent Oregon study cited in an article by Fontalis and colleagues, (6) did, however, indicate that patients requesting physician-assisted death tended to have a higher-than-average education level and belonged to a more affluent layer of society. Patients coming from a cultural background that has normalized the discussion about end-of-life decisions, as is the case in the Netherlands, tend to opt for PAD more frequently. (7)


A final argument in favor of the right to PAD is that offering patients a legally sanctioned medical end-of-life procedure can save them from the prospect of ending their lives by means of a gruesome suicide.



Doctors: It’s a slippery slope


O’Rourke and colleagues write in their article that “the physician’s professional role is to use his or her knowledge, insight, and healing skills to aid the patient, not to kill the patient.” They note that a physician’s professional training is directed to providing medical care to patients rather than assisting patients with their end-of-life transitions. (3) Healthcare professionals are therefore not adequately trained to participate in assisted dying. (6)


Doctors also struggle with determining whether the legal criteria for PAD have been satisfied. Although rare, there have been cases where a doctor was taken to court after participating in PAD procedures.


Another argument against PAD is that some patients may request the procedure too soon, as the disease prognosis can be very uncertain, and “errors in diagnosis and prognosis can and do occur.” Additionally, psychological distress and feelings of dependence can cloud the judgment of a patient about the course the disease is going to take. (3)


It is also argued that if PAD is a statutory option and a physician is required, or feels the need, to broach the subject with a patient, the perceived authority of the physician can lead the patient to choose the option “under duress.” (3) However, as noted by Fontalis and colleagues,


the evolution of decision-making processes in modern medicine, particularly regarding end-of-life decisions, and with patients increasingly at the heart of shared decision-making (e.g. the UK NHS’ ‘no decision about me, without me’ policy), have applied pressure on clinicians to reconsider their collective professional stance on assisted dying. (6)

Relatives: What about us?

According to research in the Netherlands, the patient’s family plays an important role in the PAD decision-making process, even though they have no legal role before, during, or after the process (except where the patient is a minor).


Research shows that more than one-third of Dutch physicians feels pressured by family members of the patient to perform PAD (in case of somatic illness) (Onwuteaka-Philipsen et al. 2017). This does not necessarily imply that the patient is also pressured into PAD, but it does show that family members can influence the evaluation of a PAD request in general. (8)

Should family be excluded from the PAD trajectory? “To leave them out during such an important event is not only painful, but also harmful to the relatives as it could potentially complicate their grieving process.” (8)


Relatives don’t always support the wish of a patient for PAD. When they do, the support tends to be accompanied by ambivalent feelings, with many family members preferring to first consider other treatment options, or needing more time to understand the patient’s perspective on the timing of the decision. Relatives who decide to support their loved one in their life-ending wishes, even when they themselves are against it, regularly find themselves in the position of having to defend the patient’s wishes with others who don’t understand it.


Family members often perceive the path to death via PAD as bizarre, in both a negative and a positive sense. Some find it hard to deal with the fact that there is a date set for the event, after which their loved one will be gone. Others find it to be a positive experience that helps them with the grieving process, providing them with the chance to go through the intimate experience with the patient, and giving them ample time to say goodbye to their loved one. (8)


A decision that denies the patient’s wish for PAD can have adverse consequences for all parties concerned, including relatives who cannot bear to see their loved ones suffer. There have been cases in which the partner of a patient who was denied PAD assisted in the consensual death of their loved one and was subsequently tried for murder. For instance, in a widely publicized case in Spain, a man was arrested and tried for helping his partner end her life after suffering with the degenerative effects of multiple sclerosis over three decades, and eventually reaching the terminal stage of her illness. The man was eventually acquitted of the crime of assisted suicide.



Society at large: Fear of a shift in the prevailing attitude toward suffering, and legislation “creep”


Within society the legalization of PAD has given rise to a general apprehension about a shift in the attitude toward suffering. Assisted dying could become viewed as the norm when suffering is no longer perceived as a natural part of life. Some suggest that society might come to view the lives of disabled or terminally ill people as not worth living, and see those who forego the option of assisted dying as selfish and a burden to society. People fear that this change in attitude could potentially coerce patients into opting for the procedure as a result of societal pressure rather than of their own free will.


For similar reasons, some people fear that laws permitting PAD will lead to legislation “creep,” allowing the powers that be to favor PAD over palliative care and care for vulnerable populations. Such concerns are becoming increasingly prevalent in places where health and social care systems are coming under increasing fiscal pressure.


So far, studies done in the Netherlands show no evidence of a slippery slope or legislation “creep.”


The frequency of ending of life without explicit patient request did not increase over the studied years. Also, there is no evidence for a higher frequency of euthanasia among the elderly, people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. (7)

Obviously, many more longitudinal studies from different countries need to be conducted and shared to understand the impact of legalizing PAD.


 


Where is euthanasia legal?

Although I am not a big fan of citing a Wikipedia page as an authoritative resource on any particular subject, after checking its cited references, the Wikipedia page on the Legality of euthanasia seems to be quite well informed about the current state of the legalization of this form of PAD throughout the world. The page states:


As of 2024, euthanasia is legal in Belgium, Canada, Colombia, Ecuador, Luxembourg, the Netherlands, New Zealand, Portugal (law not yet in force, awaiting regulation), Spain and all six states of Australia (New South Wales, Queensland, South Australia, Tasmania, Victoria and Western Australia). Euthanasia was briefly legal in Australia’s Northern Territory in 1996 and 1997 but was overturned by a federal law. In 2021, a Peruvian court allowed euthanasia for a single person, Ana Estrada. Eligibility for euthanasia varies across jurisdictions where it is legal, with some countries allowing euthanasia for mental illness.
Euthanasia is distinct from assisted suicide, which may be legal in certain other jurisdictions. (9)

In conclusion, assisted dying will remain a highly controversial moral issue requiring more and more attention with each new advance in life-prolonging medical measures. Developing procedures that provide people with the freedom to choose their own journey to death will require a careful balancing of cultural norms, development and enforcement of clear procedural rules, and safeguards against legislation “creep” and shifts in social attitudes toward suffering and vulnerable populations that might pressure patients to request PAD.


In her journey to death, my aunt succeeded in reigniting the discussion on assisted suicide in the Netherlands, where PAD remains a controversial subject more than 20 years after its legalization. She approached this final phase of her life from her own unique perspective in light of a lifetime of experiences. For most of her life my aunt had worked as a caregiver for the elderly, and therefore had an acute understanding of, and insight into, the struggles of people who were dealing with their own journey to death.


As for me, I was grateful for the time we could spend together in the days leading up to her scheduled death. She clearly enjoyed having her relatives around, sharing memories of bygone times, knowing that the end of her journey was in sight. The day of her passing seemed somewhat surreal to me; knowing exactly when she would leave her earthly life and enter the spirit world. Still, I am happy that she was able to part this world on her terms.



 


References:

  1. https://publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/4121602.htm#:~:text=In%20April%202002%20the%20Dutch,Netherlands%20regarding%20euthanasia%20was%20decided.

  2. https://www.government.nl/topics/euthanasia/euthanasia-assisted-suicide-and-non-resuscitation-on-request

  3. O’Rourke, Mark A.; O’Rourke, M. Colleen; Hudson, Matthew F. (2017). Reasons to Reject Physician Assisted Suicide/Physician Aid in Dying. Journal of Oncology Practice, 13(10), 683–686. doi:10.1200/jop.2017.021840

  4. Loggers ET, Starks H, Shannon-Dudley M, et al: Implementing a Death with Dignity program at a comprehensive cancer center. N Engl J Med 368:1417–1424, 2013

  5. Clive Seale; Julia Addington-Hall (1994). Euthanasia: Why people want to die earlier. , 39(5), 647–654. doi:10.1016/0277–9536(94)90021–3

  6. Fontalis A, Prousali E, Kulkarni K. Euthanasia and assisted dying: what is the current position and what are the key arguments informing the debate? Journal of the Royal Society of Medicine. 2018;111(11):407–413. doi:10.1177/0141076818803452

  7. Judith A. C. Rietjens; Paul J. van der Maas; Bregje D. Onwuteaka-Philipsen; Johannes J. M. van Delden; Agnes van der Heide (2009). Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?. , 6(3), 271–283. doi:10.1007/s11673–009–9172–3

  8. Pronk R, Willems DL, van de Vathorst S. What About Us? Experiences of Relatives Regarding Physician-Assisted Death for Patients Suffering from Mental Illness: A Qualitative Study. Cult Med Psychiatry. 2023 Mar;47(1):237–251. doi: 10.1007/s11013–021–09762–1. Epub 2021 Dec 16. PMID: 34914019; PMCID: PMC8674522.

  9. https://en.wikipedia.org/wiki/Legality_of_euthanasia#:~:text=As%20of%202024%2C%20euthanasia%20is,%2C%20Victoria%20and%20Western%20Australia).

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