David Stanley, a nurse/midwife and Professor of Nursing at the University of New England, writes about the dilemma for nurses when people in intractable pain and distress ask for assistance to end their lives. Being faced with his own mother’s pleas has challenged David to think deeply on this. Here he shares his thoughts.
In the October edition of The Lamp magazine it was reported that the Go Gentle campaign had launched in South Australia with the support of the Australian Nursing and Midwifery Federation (ANMF). Also in October I watched a broadcast of the ABC show You can’t ask that. It was the 10th episode in the series and it put questions to people with terminal illness. Of all the episodes I’d seen, I found this the most moving and challenging, partly as my own mother is currently facing the final days of her life and partly because I was challenged as a nurse about how to respond to the question of what choice people have when faced with the reality of their impending death.
On multiple occasions my mother has asked that I help her die. She has said she has had enough and that she wishes she could not wake up. She is in constant pain (in spite of high-end oral analgesics) and vacillates between being awake and in pain or in sleep-full discomfort. She has existed on only Ensure plus now for over two years.
Strangers I have cared for as a nurse have asked the same thing. At 3am while holding the hand of a man with lung cancer he pleaded to be given something, anything, to release him not just from the pain in his chest, but from the suffering and fear that accompanies the reality of impending death.
In the TV series and book The Game of Thrones, a rather violent character (The Hound) lies wounded and battered after a battle. He is not a character viewers or readers would have warmed to, but he took in and cared for a young girl (Aria Stark) who he helped, defended and protected. While she came to respect him, she harboured a bitter hatred, so that when he lay dying and pleading for her to finish his life mercifully, she ignored him, stepped back and walked away, so that he could suffer more. She did nothing to help him and compounded his suffering by walking away. I reflected … isn’t this what I have done every time I have ignored my mother’s plea to help her die and every time I have done nothing more than hold a person’s hand while they beg for their release. How does my lack of help resonate with the professional values of nursing? Where in my response to these pleas has been courage, care, compassion, commitment and in my mother’s case, love?
In the ABC program interviewees were asked “If we had legal euthanasia would you do it and when?” All of the people questioned responded positively, indicating that given the choice it would be something they would consider. A few challenged the morality of a medical system, religious teachings and government position that failed to help, with one person saying that being denied access to another option was “so unhelpful to people in the most dire circumstances of their life.” And that “to feel that you are legally bound…that there is only one pathway that is offered to you as a legal option, seems to me pretty brutal.” Brutal, like Aria Stark walking way. Is this what we teach in nursing, to turn our back? Is this what it means to be a good nurse, to walk away or at best to offer only good wishes, pain relief, pity and platitudes?
As I watched the ABC program I felt ashamed. Ashamed of being a nurse who is impotent in the face of my mother’s and my patients’ suffering, pain and fear. I wondered at my responsibilities and competence as a nurse. What use, I thought, were my qualifications, my experience, my professional values, if when a person who really needed me to step up and care, show courage and commitment and compassion, saw I could do nothing. I see this in my mother’s eyes when she pleads for help. “Help me son. Why can’t you help me?” Then in her eyes as she is resigned to my pathetic, unhelpful and powerless response, I see her saying with her eyes… “what use are you to me when I need you the most…you are a nurse, you are supposed to show compassion, care … love.” What use am I as a nurse when in the final chapter of a person’s life, when faced with my mother’s plea? I can do nothing to support her or others in their choice to take a different path towards death.
As the five interviewees testify, they want an option where they can choose something other than pain, slow decline and degeneration into oblivion. They wanted a choice about their right to die with dignity, to die an empowered death, to die on their terms and in a way and at a time of their choosing. As a nurse how can I not support these ideals?
What sort of profession have we nurtured if we cannot stand up and boldly support the rights of a dying person to choose to die with dignity? In this regard the ANMF are to be commended for their stance and support of the Go Gentle campaign.
In the final scenes of the film The English Patient (1996) the nurse is seen drawing up morphine, before the patient pushes all of the ampules over to her so that she can draw them all up and administer a fatal overdose. While I am not advocating this practice, I am suggesting that given the patient has expressed this wish, the scene offers an excellent example of patient-focused care, where the nurse cared enough, was compassionate enough and had courage enough to facilitate the patient’s choice. How I envy this fictional nurse. However for this or some other form of terminal care to be a reality, we need to change the law.
I am not advocating a cavalier approach to this matter. Any changes should be considered, drawn up with care and respect and be conscious of the fact that as with any choice, some people will want to take other paths and make other choices. These caveats should apply to those members of the medical and nursing profession who are opposed to siding with a patient’s right to choose another path. This too is a choice to be respected. However, as a profession we need to put pressure on the government to change the law. We need to support the rights of patients and people to make choices and to have the option of other paths as we approach imminent death. As a profession it is time to act to support our clients and patients, loved ones and the population in general. We need to be speaking up for the right of people to die with dignity, to die an empowered death, to die on their terms and in a way and at a time of their choosing. [David Stanley at right.]
The law needs to change and as a profession we need to lead and promote a challenge to religious dogma, medical fear and intransigence and government stonewalling. As a profession I believe it is time to act, for our silence and impotence detracts from our claims to care, to show compassion, to act with courage and to have our patients’ best interests at heart. If we are truly to be patient-focused then we need to respect their wish to make choices that we sometimes may find difficult to understand, but that we should honour regardless.
Read: Be the Bill about the SA voluntary euthanasia bill.