It has been an incredible month. We attended conferences in Texas, Ontario and California. We are home now, absorbing the learning, and trying to integrate what we learned into our beings. Most profound for me was the opportunity to attend sessions addressing Physician Assisted Dying.
The debate is over. Physician Assisted Dying has been legalized in Canada. Health care professionals and administrators in hospices and palliative care (HPC) now need to develop policies outlining what services their HPC program will and will not provide. Physicians need to decide how to respond to requests, whether or not they are willing to provide a “hastened death” and if not, then decide who to refer people to. Nurses need to decide how they will respond, both within their formal work setting, but also, how they will respond as a family member or friend when the questions about hastening death are raised.
The entire health care team will need to reflect on how to respond when someone chooses a hastened death over the services of hospice and palliative care. Will we feel like we have failed? And if we feel that we have failed, how will we sit with that in the coming days, or more particularly, in the nights ahead?
As a nurse, if I choose to attend a death that has been hastened, how will that be for me and for the others who attend? Rather than witnessing the physical changes that often occur over a matter of days and hours, how will it feel to watch a person go from alive and cognitively intact, to waxen, cold, and dead,…. in just moments?
A few people have asked me what I think and feel about Physician Assisted Dying. I have avoided sharing my thoughts over the past years… but am willing to share my thoughts and the process I am going through today. Please read my thoughts knowing that like many of you, I am trying to make find my way in this new territory. These are my thoughts of the moment.
For much of my life I have been involved with caring for people and creatures who were dying. I cared for family, friends, community members and patients. For decades I sought meaning in caregiving and in dying. I found meaning and value in the last weeks, days and hours at the bedside. I searched for the benefits of family sitting vigil. I tried to find the good in the challenges that occurred. I came to believe that there was growth at the end of life, growth in the dying days, and sacredness in the act of caring for and being with.
Not only did I find value in the process of dying, I also sensed that on occasion the dying person was able to choose when they wanted to die naturally. Over the years I have been asked by friends to be with them when they were dying. Interesting to me, is the number of times when despite my limits and inability to be with someone constantly, I was there when they died.
For example: many years ago, when we were both young moms, my friend was diagnosed with breast cancer. I went to Vancouver to bring her home to the island. As I left her side at the hospital that night, I told her that I would not be able to return for ten days. I felt awful that I could not be there until then. I kept in touch by phone, and sent messages along. Ten days later I drove the island highway and made my way to her hospital room. Alongside her husband and her sisters, we companioned her. We waited with her and she died.
A similar story has played out many times since. Someone asking, “Kath, can you be with me when I die? Can you be with my family?” Try as I might to be there, I was often not able to attend 24/7 because of family and work commitments. Yet, often, death and I, were there at the same time. Natural death seemed to have a plan of its own.
With the legalization of assisted death, I look ahead and consider a new request. I can imagine that if I was in the Washington or Oregon, the request might be, “Kath, can you come and be with me when I take my medications?” or if in Canada, the request might be, “Kath, can you be here when I receive the injection from the doctor? Can you be here with my family?”
I wonder. How will I respond? In both cases, I do not have to be the one to give the medication. All that I am asked is to be present.
The request is simple enough. But then the planning. The planning seems surreal.
In Oregon and Washington states, once the person has met all the criteria, the person can set their own time and take the medications in the privacy of their own home.
In Canada, the dying person will need to arrange with a physician to inject the medication into their blood stream. What happens if the person decides they would like to live for another day, another hour? Would the person feel they need to go ahead with the plan because the doctor had arrived?
And as I think of the injections, I am reminded of the presentation at the Canadian Hospice Palliative Care Association conference by Dr David Wright, a nurse at the University of Ottawa, who is exploring the nursing perspective on this issue. David asked excellent questions: What does the nurse experience if the dying person chooses a hastened death over hospice palliative care? ….. He then asked… or was it someone else who asked, “Even though the physicians inject the medication, how many physicians do you know who can start an IV without the help of a nurse?” Nurses are a part of this process.
At the California Hospice and Palliative Care Association Conference, Anne Koepsell put forward four categories for how hospices respond to the requests for Physician Assisted Dying:
Embrace: hospice designates a social worker to respond to the requests, physician provides the prescription, staff are permitted to be present at time of death, and the hospice coordinates with Compassionate Choices.
Educate and support: hospice staff provide referrals to someone who is willing to discuss and assist with hastening death, the staff may or may not be present when death occurs.
Distance: hospice staff refer to a resource who will address the request.
Denial: hospice refuses to allow staff to discuss the request, and does not make referral.
At this moment in time, these are the three things that I know for sure:
1. I do not like the term “Physician Assisted Dying”. It is my opinion and my hope that physicians should assist every person in dying. Hospice physicians assist the dying person. They do not hasten it. So, I prefer instead to use the term, “Physician Hastened Death”, or “Hastened Death”.
2. I would like to see a world where everyone does have a CHOICE, a real choice, and I would like to see that Hospice and Palliative Care are one option. At this time, less than 30% of dying people receive services from a specialty Hospice Palliative Care team. When a person lives in remote and rural areas, when a person is not from a middle class Caucasian family, the person is much less likely to access HPC!
3. Finally, all HPC professionals need to be comfortable with talking with dying persons about the option to have a hastened death. They need to be able to hear the concerns and questions, to share the resources for hastened death, and to share what hospice and palliative care have to offer.
We, hospice palliative care professionals are at the bedside of people when they ask these questions. We, know how to talk about difficult things, how to talk about goals of care. We know the resources, we know the options, we can advocate. We are with friends and family when they ask questions about hastening death. No matter what people decide, we need to be comfortable with the conversation.
What are your thoughts on “Physician Assistant Dying”? Please leave your thoughts below, or chime in on our Facebook page.
Thank you Kath for getting this honest and real blog about this important issue that will impact all of us, whether now or later, a change in our Criminal Code. There is no denying any longer, that all of us will die, and that we have choices of how, when and where we die (at least those of us who are white and middle class). We need to open all dialogue about death, dying, loss and bereavement in all care settings, with health care providers, caregivers, family and patients. We need to have public conversations about this social issue, which is everyone’s business.
Great to hear from you.
Yes, so right, regarding white and middle class. I did not know that in the states, the medications that are used to end one’s life, are expensive. It is about $2,000 US funds to self administer the oral medicaitons… vs the medications suggested in Quebec are only about $100 but require injection. Interesting.
ANd yes, this is a social issue. Such an important social issue. I love the work that is being done on “Compassionate Communities” and acknowledging that this is not a medical issues in isolation.
I received an email this morning from a dear colleague, who did not post publicly, but she also mentioned the concern about assisted dying and how the person would miss out on the spiritual and social experiences of the dying process. Also important components to consider!
You pose some very good questions. As nurses we often provide care to people whose choices we may not agree with. I have heard many people say we should not judge. After many years of nursing and teaching I have come to the conclusion that we all judge; that is how we assess and evaluate situations. We need to be honest regarding our judgements and opinions. Being aware of our judgements means an awareness and an honesty that can aid us in separating our issues from our patient’s. Then, we do our best to deliver patient centered care. Our belief system is ours and should not compromise the care we deliver. It is naieve and unrealistic to assume we will only ever care for people we like or agree with. One of my questions would be, how do we provide care when our values/beliefs clash dramatically with what is being asked of us professionally? What stand will we take professionally and what is the potential impact on us as individuals? What will be the expectation of employers?
Great to hear from you!
Interesting that you comment about judging. In the text I am working on now for Practical Nurses, I have been using the phrase, “withholding judgement”. I wonder if when we “withhold judgement” it acknowledges that we all judge, both the judgement that is involved in assessment, and the judgement that sneeks in from our innermost being… but if we ‘withhold judgement’ then we put that judgement to the side and focus first and foremost on the person. What do you think?
Regarding the challenge of providing care when one’s beliefs and values clash with what is expected… hm.. that is a huge question that will be addressed, or need to be addressed in policies at the national, provincial and the institutional level.
You are in an interesting place as you educate our future nurses.
I agree that there should be a choice – when all reasonable avenues have been explored, informed consent, a plan, and other details in place. I hope that Canada will give the choice to the person/patient – the Dr provides the prescription and then leave the time and place to the person/patient. If the person/patient is unable to carry out the route of the prescription, then an alternate route/plan could be initiated. Again it is about supporting the choice, your choice. I will sit by your side, hold your hand, cry with you and your family, rejoice, hug and share however the choice should be yours should you wish to have a hastened death.
Thanks for replying. Question for you: When you write that you hope Canada gives the choice to the person… are you referring to giving the person choice as to whether or not they get a prescription from a physician but then take it in the privacy of their own home at their own time, or whether they have to request a physician to attend the death and actually administer the medication?
Hello from another Teresa,Hello from another Teresa, and Happy New Year!
I am very sad that Canada has gone this route. I have a firm belief that all human life is sacred and warrants protection from conception to natural death. I don’t believe that one can say that they value life in one circumstance and not another…..I believe that a person needs to be true to their conscience.
How many elderly persons will be feeling as though they are a “burden,” to others when they are sick, infirm, or old, dying, or simply without the bloom of youth any longer? How many of them will be coerced or forced into ending their lives early? How many kids are just itching to end granny’s life so they can claim the inheritance?….. How many disabled persons will now feel pressured to end their lives?….. I will not be there if someone chooses to end their life by physician assisted suicide, and nor will I start an IV or administer any drugs to end someone’s life. I will not refer for assistance…. However, if you want palliative care and a natural death? I will be there for you.
Thanks for sharing your thoughts. THere are many people who understand your concerns and are asking the same questions. ANd there are many who disagree. I think it is important for us all to agree and to disagree – and to be respectful of one another.
My question for us all… how do we support a nurse, who like you, feels so opposed to Hastened Death? And how does the nurse who opposes hastened death support the nurse who supports it?
How do we function as a team? How do we focus on that which we do best, or that which we SHOULD do best, which is provide excellent hospice and palliative care?
So many questions.
Keep the questions coming.
Kath, this is a great start.
As part of the public who wants to provide input, I have a few observations and questions about hastened death that I would like to voice. From my perspective, hastened death = suicide and for me that is morally wrong. Having thus painted my perspective with a broad brush, I also realize that there are qualifiers that arise with different circumstances. My good friend is dying from oesophageal cancer which he has endured bravely, but has now decided not to submit to forced feeding since he can no longer swallow, so he has chosen to no longer eat. That seems logical and right to me and I admire his choice in facing his options. On the other hand, I am close to a young adult who has suffered from chronic depression for years and often is of a mind that she would rather die than face more emotional pain. As she considers this choice, would I be complicit to her taking her own life if I were to advocate her responsibility to tough it out and keep on living, and then leave instructions on how to access a gun or poison should she choose otherwise. Definitions made by the criminal code won’t change the morality of my complicity.
So, as a bystander or as a friend, I am faced with my own choices to either embrace, educate and support, or distance myself from or deny the choices of my friends who are facing hastened death. If I were a medical professional dealing with these options and have deep moral feelings about the sanctity of life and the growth potential of enduring difficult, demeaning and painful death, would I be violating the revised criminal code or be unkind and unfeeling if I were to advocate against physician hastened death for my patient and then distance myself from that choice were he or she make it.
There are probably many shades of complexity between the two circumstances I have illustrated. One of the issues I worry about most is the potential loss of right to advocate according to my own personal feelings or loss of my choice to not administer treatment to those who will be entitled by law to choose physician hastened death.
Thank you for joining in the discussion, both as a professional and as a member of the public.
I too feel very comfortable with the decision to stop eating. And when looking at the complexity of issues, it is interesting to know what is possible and what feels right, or what feels wrong.
And it is interesting to think that our response is different depending on the illness the person has, and how close to death the person is.
When you comment on your young friend with depression, is your point more about the bigger picture of the criminal code, and less about your personal role in this?
Yes, as a friend you are faced with the choice to embrace, educate, support or distance… just like the hospices do – that is an interesting insight for sure.
You mention ‘distance myself from or deny the choices of my friends who are facing hastened death.” I am not sure how you “deny”. You can disagree, but not sure about “deny”.
If you are a medical professional, and have deep moral feelings and not want to participate in the hastening of someone’s life, my understanding is that you will not be violating the criminal code (not sure if that is the right word). I think that is one of the pieces that is being addressed by the committee looking at this, and ensuring that people have the choice to participate or not.
Ron, the next part of your question… would you be unkind and unfeeling to advocate against physician hastened death? Ron, I think that it will be important to be with people as they struggle with this issue. They will not come to this issue lightly. When you practiced as a dentist you were in a expert; in your faith community you were a spiritual care leader. In this question, I think we come to this with less expert and less leadership, and need to seek to understand in a way that we may not have had to understand before. For example, there are the cases that are beyond comprehension, and in those situations Ron, I suggest that you will want to be present and listen before you jump in and advocate against! OH… there is so much more that one could say about that… So, whether you would be “unkind and unfeeling” only you would be able to judge that. Whether other people would consider you “unkind and unfeeling” – probably there are people who would.
“Would you be unkind and unfeeling if you were to distance yourself from that choice”? is your next question. I think it depends how you distance yourself. Are you going to distance yourself from the choice or from the person? Are you going to be able to care about them as a person even if you disagree with them in a crucial life decision? You do not need to be present at the time of death to be able to communicate to someone that you care about them as a person.
“Concern for the potential loss of right to advocate according to ones personal feelings or lose your choice to administer treatment…”
In Oregon and Washington there are communities where there is no physician who is willing to offer support for hastened death. My understanding is that no one has been forced to offer this service.
Ron and others, I am responding to these questions while simultaneously holding many questions in my mind and heart, on both a personal and professional level. My thoughts and my ability to express my thoughts are limited. I respond to these blogs with a bit of concern. I Have not edited my responses, or evaluated each question carefully. Please accept my offerings – and know that I write, not because I know, but because all of us share the “not knowing.”
Thanks Kath for the thought provoking blog. This topic has been on my mind a lot this past week when a friend’s father living in Oregon chose to end his life with ‘Compassion and Choices’ last Thursday. He still seemed very full of life, however, the pain was getting tough to deal with. It was challenging for me as a caregiver and end of life educator to not judge, and also wishing to have helped my friend more through his process of coming to terms with his fathers decision. This whole topic has certainly brought out more conversation on death and dying that is for sure.
Wonderful to hear from you. Memories of walking with you by the river in Edmonton!
Rayne, I wish there was a good non verbal way to respond to someone online. If I could, I would lean forward, and pause, and share some sound, somewhere between, Ah… and hm.. and mmm,.. and hear you share your story of your friend, his father, and his choice.
I would find it hard not to ask, “Was hospice involved? Was he offered good pain management” etc.. (Because I would be angry if a hastened death was his only option for pain control!)
And then I would have wanted to hear about your friend. And I would wonder how your friend is managing now, and how that experience was for him. And, I would have wanted to learn from you, your experience, and your learning of what would be helpful.
Yes, this topic surely has brought out more conversation on death and dying. And, that is your area of expertise.
I received an email from a colleague who did not want to post publicly to the blog. Her comments included a reflection on people dying in the palliative care unit where she worked. She wrote, “In the time before their death, many patients talked with other patients, made it outside in good weather, reviewed their lives, talked with family, neighbours, friends. They talked with nurses. With hastened death, this time may not occur. In my opinion it is taking away part of what it is to be a human being. People could still say their goodbyes with shortened death, but the experience people go through cognitively and spiritually is cut out.”
And Rayne, that is the perspective that you and I both share… the feeling that there is growth, or there can be growth at the end of life. Then if we reflect on Ron’s questions about the role of the professional… If I am at the bedside as a nurse, is it appropriate to share the thoughts and impressions of the value of the dying process? Interesting discussion. We will need more than a few walks at the river to discuss that!
Thanks for taking the time to write your thoughts Rayne. ANd all the best to you and to your friend. Please pass along my regards and hopes for a healing journey.
PS. For those who do not know, Rayne is a death midwife, and has developed beautiful little cups, called, “Tearcups”. http://www.tearcups.com
Hello again from the other Teresa 🙂
Thanks for posting my thoughts, Kath. One of the things you mentioned is about supporting a nurse such as myself? Well, I am not that optimistic. I might be able to “opt out” for a short period of time, but sooner or later there will likely be forced participation. Heck, they have already started with forcing people to get flu shots.
It is like the frog in a pot of water. If you turn the heat up slowly, the frog may not figure out in time that the water is boiling. We are already at the boiling water stage.
What it will amount to in eventual practice is forced moral relativism and the total end of Judeo-Christian values. In other words, a person will not be able to opt-out if their conscience and/or values and beliefs warrant it. Communism at its finest…
As far as supporting another nurse that does not share my views in terms of euthanasia and such? There are still ways to work around that for the time being. Refuse patient assignments, go on break, change facilities, change line of work, move to another country without euthanasia…
I am a tough cookie. I will do whatever it takes to refuse. If the day comes when I am forced to kill someone or hasten their death? That is the sad day that I hang my scrubs and stethoscope forever.
I realize that I asked people for their views on Physician Assisted Dying. And you have not been shy to offer yours. 🙂
I hear you. It is my hope that there will always be policies to allow health care professionals to choose whether or not they want to participate in Physician Assisted Dying/Hastened Death.
If we are going to work together well as a team, which we want to do… generalizations and name calling will not get us anywhere. And I think that supporting one another needs more sensitivity than just going on breaks.
Finally, The word “euthanasia” has many meanings, and should not be used without clearly defining the term. This blog is about Physician Assisted Dying.
I am happy, we have at last found a dialogue where we no longer refer to as ASSISTED
SUICIDE, but assisted end of life. Although a dedicated volunteer “in my opinion, I find myself often in a situation, where I hold the hand of a dying person and trying to cheer them on “to go”.
Contrary no many soothsayers, most Physicians do not have the skills to make a dying
person’s last journey painless, as I witnessed a dear friend of mine, deeply “medicated”
to relief the pain and no longer conscious, but reaching with his hand fore the spot where the cancer had eaten away part of the rib-cage causing him unbearable pain.
I find it humane, if the time comes to transition and of my free will to have this helped by
a qualified dedicated professional, not being forced into an alternative.
Pleasant surroundings, dim lights, soft music and compassionate care is what all of us
deserve at THE END. Unfortunately very few of us will experience this.
Those, that believe, that only the LORD can make this decision, I am sure HE will
forgive us for our wish to leave behind the pain, to hasten into HIS arms sooner.
I don’t like the term Assisted Suicide either.
I think of your comment on making the dying person’s journey “painless”. I wonder about that term. We are human beings. Is life in its complexities ever really painless? It would be nice to think that dying could be painless. But even with good palliative care, and with hastened death, there is pain of departing… and that is reality. Good physicians, good palliative care physicians, good palliative care teams, and good technicians who hasten death… non of us can get rid of all pain. Pain is part of loving and part of leaving.
And I smile at the image of pleasant surroundings, dim lights and soft music… as I think of a woman who wanted to die with the music blaring!
Warm regards Tony.
Thanks for your thoughts.
Ron and Kath, you both made some really good points about not eating and such. Basically, it is not that one is hastening death you might say, but it is coming to the realization that the disease process itself is running its course. At least that is how I am trying to understand it, so please correct me if I am wrong?
In other words, a person does not have to do absolutely everything possible at all costs to stay alive (try each new experimental drug, have cold water baths or unusual treatments, or whatever new-fangled therapy, etc. is around). Basically, completely heroic and extraordinary or disproportionate measures. I am not always so good at arguments or debates or philosophical explanations, and one day I would like to take a more formal course on those things. In the meantime, I am trying to explain that sometimes there are valid reasons for stopping treatments and not prolonging a natural death by trying everything available.
A loved one had ESRD–end-stage renal failure. It became obvious when it was not working anymore that short of a miracle of getting a kidney transplant that there was nothing else that could be done. (There was not an issue of being a suitable candidate for transplantation either. Obviously if that were a possible solution, it would have been chosen in this case, but it was not). The doctor explained that it would be basically about a week before the kidneys shut down completely. The decision was made and natural death followed a week later. A week to the day if I remember correctly. Good palliative care was available and the death was peaceful.
As far as depression goes? I feel for the young person with such a painful burden. It can be hard to find a reason to go on when there is a dark hole that is hard to crawl out of. I am survivor of numerous traumas and tragedies. It can be hard to go on minute by minute let alone day by day. The only thing that I can say is that sometimes the best medicine is letting the person know that they are not alone, others care, and to find some little joy and happiness somewhere–watching puppies play, watching little children play, being by the beach listening to the waves, writing poetry/thoughts, coloring! Whatever it is.
I really think one of the biggest reasons why people consider suicide is because they feel hopeless. Encourage someone to keep hope in whatever little ways are possible. Hope brings more hope. That is what I did with one of my patients once.
He actually asked me outright if I would help him die. It was the first and only time that happened to me. I recall pausing for a minute before asking him why he wanted to die. I honestly don’t recall the conversation or his reasons, but I very gently informed in the course of it that I would not help him, and could not help him.
One of my questions to him was, “Do you have any people in your life that you want to teach something to or share something with that you haven’t done yet?” Or to that effect. “My grandchildren.” “Well how can you teach them x, y, z if you are not here? Don’t you believe that they will always remember it was you who taught them how to ride a bike, build a fort, or ? Only you have wisdom and gifts to share with them that they could not get from anyone else. If you are still here, you have a much better chance of sharing that, don’t you?”
Long story short, he got better pain relief and more assistance, and he left the hospital with hope and excitement for the future.
Well it is one thing to say what my beliefs and values are, and it is another thing to care for a person. Each person has to be met right where they are at. Listening goes a long way to determining where the person is coming from before attempts are made to figure out where they are going. So just because I am against hastened death does not make me a cold, uncaring, unfeeling nurse or person. I am actually very compassionate and try to show great mercy and tenderness to those that are dying. I don’t know all the reasons why people die, and I don’t know all the reasons why people that were supposed to die end up living and walking out of the hospital.
I have seen people die of all sorts of natural causes too many times to count, and I have cared for people that have botched their suicide attempts and lived. While I would be sad that they tried suicide, I would still care for them in their failed attempts to end their life. (In fact, one of the very first patients I ever cared for a person that failed his suicide attempt. I will never forget the things I learned from caring for him. )
I could not, however, be a willing accomplice or stand by someone’s bedside while they were actively pursuing the deed. There is a difference. I would also find it extremely difficult not to jump in a river if a person was being swept away by the current or break open the door of a burning car.
I was in a serious car accident years ago–our car caught on fire after being hit head-on in a multi-vehicle crash. To this day, nobody can explain how I got out of the car after being pinned in it and later being found by a rescuer wandering. The rescuers got my other family members out and came back to get me, but I was somehow already out even though my entire leg had been pinned under the seat in front of me. I went in and out of consciousness, but apparently my first concern was for this car that had a smashed window and had flipped upside down. All I could see was blood on the broken windshield. I was told by witnesses that I kept yelling, “We have to help him!” Well, little did I know at the time that the guy in the car was the guy that caused the accident in the first place…
Thanks for your point about clarifying terms. You are right and that is a good reminder.
Well, as far as supporting others and working as a team? That is all well and good in theory, but much harder to execute in practice if the team members do not share the same goals.
If two oxen are yoked together and expected to pull a plow and till the soil, they need to both work together to move the plow forward for the goal of tilling the soil. If one or both are stubborn, the plow is not going to move and the field will not get tilled. You either have to get out a crop and tap them on their butts to get them moving and/or change one or both members of the team or somehow get them to move forward (dangle a carrot, feed them an apple, whatever it is).
There is no way that some people will ever be on the same team because they do not share the same goals. (Because in the end, they are not wanting to till the same field or capable of sharing the same yoke). If I need to go on a break while my colleague “helps” his/her patient die, then he/she had better be prepared to be the only one in the room, so to speak. I won’t be there as a willing or silent witness, period. And nor would I want to be there in US if a prisoner were being executed by lethal injection.
At the end of the night, all I have to live with is my conscience. I am not going to and cannot support someone and break my conscience simply because they work with me. I will not apologize for that either. Cheers. On to eating some home canned peaches and ice cream-yum! I will check back another day on this discussion board.
In answer to your question about “deny”, I am quoting from your quote in the original posting. According to its definition deny would be-” hospice refuses to allow staff to discuss the request, and does not make referral. ”
Denial happens. We may deny our child the right to smoke in our house and we may deny the child our assistance in purchasing a car. Adults may be denied by a banker from extending a loan or increasing their debt. Denial is often an act of defining responsibility. I presume hospice care givers can deny the request of a patient for them to directly contact a resource that would assist in hastening death. That person would be on his own in finding that help. While denial is not necessarily compassionate, it may also be the only way that the person wanting to make such a choice can become fully responsible for that choice and to free someone who is morally opposed to such a choice from any responsibility for the other’s choice. While for some, I have suggested that hastening death is equal to suicide, to those required to perform the service it might be equal to murder.
As we embrace the distress and proffer care for the suffering of those facing the end of their mortality, is it not possible to choose not to be an instrument in supporting them in a choice they might make if we feel will that choice would be to their detriment? (eg “I won’t buy cigarettes for you, if you want them, buy your own.”)
This is a question, Kath. I am not necessarily advocating denial, but will the end result of the new legislation bring an end to that option. Will the only advocacy permitted by the state be the advocacy for the legal right to hasten death?
Also, is it fair to assume that in the role of advocacy (this is the term you used in your original essay) the advocate will not listen and empathize but will ” jump in and advocate against!” Many advocates are not only practiced in empathizing and careful listening but they also state their advocacy for a principle or a cause, not against the other’s ?
Thanks for your comments. This is a topic that we all need to consider. We need to consider not only what we feel personally, but how we might support and care for those around us.
Warm regards in your considerations 🙂
Thank you for your courage in discussing this very volatile topic. I, as a hospice palliative nurse, have pondered this very subject. Regardless of how we label it, assisted suicide, physician assisted death, it is a difficult decision for all involved.
Initially, as a palliative home care nurse, I felt that it did not belong in the same genre as hospice palliative care as it contradicted what we ” strive ” for, that being “quality of life” until natural death occurs . However , as I think back on my experiences as a palliative care nurse, I must admit, that I have inadvertently and indirectly been a part of ” assisted dying”.
I believe in “choice” ! I believe every person, regardless of ecomonic status, religious belief, color, or geographical location has the right to decide for themselves, what quality of life means to them as individuals. That being said, I believe each of these individuals has the right to be educated in ALL options available to them including the ” right to die”.
My father was diagnosed and given no options for treatment. He was told to go home and get his affairs in order. I decided that my Fathers wish to remain at home would be my responsibility and I set out to do this with no knowledge of palliative care and very few resources to support me. Watching my father waste away and seeing the helplessness and pain it cost my mother still haunts me. I lay awake at night thinking, I could just bump up the ” morphine drip” and help him and my mother end this pain. Knowing my father, I could never have actually done this. My dad would have felt I was a coward, looking for an easy way out , he would not have supported this at all and yet the question was never asked. He was never given this choice. My father suffered and died an agonizing death as neither I nor my mother had the knowledge or support to change this.
I have since developed a passion and read, discussed, educated myself in hospice palliative care, in the hopes that I would never have to witness this depth of suffering ever again.
I have had the difficult conversations with my clients over the years and more than once I have been asked to participate in ending the suffering of many. I have always taken the stance of empathizing with their desire to end their suffering , and educating them on how I can assist them to achieve quality of life using a “palliative care approach”.
This brings to mind, a patient I had who’s life became dependant on many hours a week hooked up to a dialysis machine. He compared this to artificial life support and insisted he had no quality of life. He could no longer travel, he could no longer enjoy the things that made life worth living. He did not have the option of a physician assisted ” peaceful painless death”. He did not even have the ” benefit” of a potential prognosis or the potential of not having to rely on a machine to keep him alive. His ” choice” was to discontinue dialysis, knowing the outcome would be his demise. He discussed this decision with his family, with his physicians, and with his nurse. Even though ” euthanasia”
was considered illegal , it was accepted and allowable to refuse life saving treatment. I ,as his home care nurse, had to respect his wishes, whether or not I agreed with choices. I cared for this gentleman and provided all at my disposal to ensure his suffering was minimal. Did I not indirectly provide assisted death? Thankfully I am at peace with this experience, knowing this was his choice based on his perception of quality of life. Personally, I had achieved my goal in assisting this man to a painless peaceful death.
This brings me back to the subject at hand. Do I , as a hospice palliative care nurse, believe assisted or hastened death belongs in the same ” specialty” as hospice palliative care and would I as a nurse, participate in the hastened death of a patient?
I believe in choice. I believe all people have the right to decide what ” quality of life” means to them. If I can ensure my patient has been provided with the education and resources that should be available to all people equally, then as a nurse, I believe I could provide and participate in whatever would provide the patient with “quality of death” as he perceives this as well.
Thank you Kath for allowing us a venue to discuss this very difficult subject. You are an amazing and courageous woman pioneering an immensely challenging aspect of client centered care. KUDOS!!!!!
Thank you for your comments and sharing your experiences. I wish that we could sit together and talk about your dad, and about the patient who decided to discontinue dialysis, and about your questions of what our role is as hospice nurses.
Interesting… one reason I do not like the term “assisted dying” is I believe that hospice professionals and volunteer all “ASSIST” a person in dying, not in hastening death, but in making them more comfortable in the journey.
For me the decision to stop dialysis and allow natural death is not the same as an injection or a pill that hastens death.
Maryjane, one of the concerns that hospices have about offering “Physician Hastened Death” is the concern that the public will think that is what we “do” and that is what hospice is about. I do share that concern.
Interesting your thoughts about increasing the morphine dose as a way to decrease your father’s time until his death. THe reality is that morphine is not the drug of choice to end someone’s death. Nurses sometimes worry that they are going to be the person who will give the ‘final dose’, and they worry that in giving the ‘final dose’ that they have in fact killed the person. The truth is that eventually there will be a last dose, but it is not the last dose that will cause death. We give medications because people are dying, we give medication to help people be comfortable. Sometimes it is possible that when people are comfortable, they seem to live longer, not shorter. And perhaps there are times when they die a bit sooner. My sense, (not scientific research!) is that we have less to do with the time of death than we think.
Anyway, it is late at night, and I am rambling… 🙂 but I did want to respond before going to bed, as I leave town in the morning.
It is lovely to hear from you, and I send my regards to you and your team!
Hello Kath! It is so interesting to have read your blog and the remarks that followed today. I am a retired nurse, with my last 25 years being a rural, small hospital nurse and the director of a volunteer hospice. I remember in the 90’s our struggle, both as a small, volunteer hospice program, and individually, with euthanasia and writing a policy that was compassionate, and caring, but in the end, did not support euthanasia. The fear of the slippery slope leading to patient’s not having a choice of education, symptom management, and loving end of life care, but only the feeling that, “I am dying, I am a burden, I should just die now” led to our opposition of euthanasia. We watched as OR and WA adopted the Physician Assisted Suicide, and now CA has joined, as well. I have been in touch with our volunteer program, consulting with the new director on a path to helping the organization join the conversation and develop new policies and procedures.
I retired in ’07 in part because I was facing care for my aging parents and step-parents. Of my 5 siblings I was the only one single and a little more available for end-of-life care. In the past 11 years three of those five parents have died. I could share with you my broken heart as each of those deaths was not what I would have chosen for my loved ones.
As hospice and palliative care nurses, we struggle with judgment, compassion, care, morality; we want to do the right thing. Professionally I was able to be with so many people when they died, and teach volunteers to do the same. It felt so important, so necessary, and so rewarding. To not be able to give my loved ones the same care is a heartache I can hardly bear.
I believe hospice and palliative care professionals do make a difference, and will find a path through the new legislation. In the end, most people do want to be at home and die as naturally as possible. End of life professionals care about their patient and will continue to be patient advocates with the most loving hearts and tender care.
The bigger picture I am seeing in my retired years, is what can we do to help all health care workers (and the organizations for whom they work) to be more aware of end of life needs and services available to really help their patients find the right support and care; to have compassion about the services they personally offer; to really care about the patient in front of them, as a human being, with family that love them? I am not as sure of the overall integrity of our health care system and the professionals in their employ. The hopeful, optimist, and caring professional in my heart, is discouraged. After giving my ALL for so many for 38 years a professional, I have not had positive end of life care for my loved ones.
I encourage the dialogue to continue, to be a voice for concerns; reservations; acceptance; and embracing. Each individual voice needs to be heard. Each individual is part of a team; a team whose goal is to bring about the best end-of-life care available.
I hear you – and am so sorry to hear that your experience as a family caregiver has not been positive.
One question I have for you – Is it possible that when you were providing the care, do you think it is possible that the recipients of care ever felt as you feel now? The hours at the bedside as a family member: the unknowns, the waiting, and more waiting, the sleepless nights… the picture is different.
The concerns you feel, the question you ask, “What can we do to help all health care workers (and the organizations) to be more aware of the end of life needs….” My response to this question is my determination to provide resources that are “delicious and digestible”, that are easy for health care workers and nurses to understand and apply, and my hope is, that in some way this will start to impact and improve care for the dying.
Warmest regards, and love to you and your family
It is disappointing to know the result of the Supreme Court. I believe that physician assisted death should not have been legally. But, I guess many people do not share the same view. So, let’s hope for the best that everything happens for a reason, and this is a good one.
I hear you.
And you are right, the majority of Canadians do not agree with you. This is a choice that people want to have. And many people believe that not only is it a choice, but that it is a right.
The challenge is, how to move forward in a way that honours individuals who have different feelings and beliefs about this.
That is the challenge that the advisory group is working on, and that is a challenge for each organization to consider as policies are developed. It is also a challenge that each team will have to face.
One of the critical lessons of living in a diverse community, and a community that celebrates its’ diversity, is to figure out how we create safety, how we extend respect for individual opinions that are different than the majority.
It would be nice to savor this conversation over a cuppa something, or a nice long walk to talk about how you are handling this issue in your personal and professional life.