A place to talk death and dying issues
Comments
-
Still praying for ALL of us to have a fully pain-managed quick transition.
That's my deal...I just don't want to be stuck in a damn bed on hospice for WEEKS on end in tremendous pain.
I'll take palliative sedation if I need to.
L
0 -
Exploring the myriad issues involved in palliative sedation as well as physician aid in dying truly takes us into the land of making fine distinctions! (Not to mention if we were to start exploring voluntary and non-voluntary active euthanasia, which are illegal no matter where we live in the USA, even in states where physician aid in dying/physician assisted suicide is legal.) One aspect that helps to guide our understanding is clarifying the main motive behind a particular action or intervention. If the main motive is to alleviate pain and suffering, and death is foreseen, ethics and the law typically allow. So, if death is not directly intended but is unavoidable, the action is morally and legally permissible. Once the main motive becomes the hastening of death, then the action(s) involved become legally and professionally problematic--which is why various legislative bodies and organizations have worked to develop statutes that guide the practice of physician aid in dying. To be sure, non-action/inaction may also hasten death. (Here we might talk about withdrawal of life prolonging measures or the voluntary stopping of eating and drinking, for example.)
Much of the controversy can be traced back to the ways in which professionals perceive the goals of medicine. For example, some doctors believe that it is wrong to do anything that will hasten death, even if the motive is to alleviate suffering. Others focus more on alleviating suffering and promoting a person's autonomy & dignity, recognizing that some actions and inactions may indeed hasten death. When I worked as a clinical social worker in hospice, our primary goal was to alleviate suffering and promote autonomy and dignity, knowing that disease progression is the primary driver toward death but also recognizing that certain interventions would hasten death. Initially our program had no policy and protocol on palliative sedation in place, so the need for providing sedation was handled on a case by case basis. But when you do that, important principles and guidelines may be overlooked. For example, does a palliative/hospice care team provide palliative sedation for management of intractable physical pain only? Do they extend sedation services for those who are grappling with existential suffering alone? These are important questions to ask when one is interviewing a potential hospice provider. Some hospice providers do not offer this service at all.
More than a few times my hospice team was asked by a person at end of life: Will you hasten my death to end my suffering? Usually that was not along the lines of will you give me enough morphine and others meds to alleviate my suffering, and if I die, that's okay (although that was indeed the case for many). I'm talking about the occasions where we would be asked: Will you give me enough medication to end my life in the very near future, not allowing disease progression to take its course and waiting for that inevitability. Aid in dying was not legal in the states where I practiced hospice clinical social work, and most of the time I first helped the person to have a more expanded conversation about her/his end of life goals, the values and beliefs that shaped those goals, their fears about any number of issues (such as uncontrolled pain, loss of dignity, dying alone, etc.). Sometimes the conversation itself allowed for more clarity so that the person felt more comfortable about the range of hospice services typically provided meeting her/his needs, but sometimes the conversation led to clarity around "I want to actively choose the time and method of my dying and I want your help in doing so." At those times I referred the person and/or caregiver to Compassion and Choices. Did I wish there were other options? Surely. Was I willing to make myself a martyr? Surely not. Did those experiences lead me to support more systemic changes that would result in best practices in palliative sedation and physician aid in dying? Absolutely.
One of the misunderstandings that I observed time and time again was a person thinking because she or he had signed an advance directive that others would automatically know when, what and how to provide various interventions and/or withhold others to promote the person's stated wishes being respected. But as we all know, life and dying are much messier than simple checking of boxes or writing, "I don't want to suffer at the end of my life." And that's why conversations like the one we are having here need to take place with our loved ones, our caregivers, our medical team members, our palliative and hospice team providers, the doctors in the Emergency Department, etc. We might like to think that as we face the demands of living with life limiting illness that others would automatically figure out exactly what we need to have a "good death" (which is another whole conversation) and that our precious energy and time might be spent on other matters. However, being clear about our expectations of a "good death" and what paths are available to us in having those expectations met is critically important to having our wishes respected and, most definitely, an important use of our precious energy and time.
0 -
Here in NJ we do NOT have any physical-assisted/death with dignity options. My friend Ann Marie was in a tremendous amount of pain, and death was approaching. Despite all the pain medications that were offered, none alleviated her suffering.
After much thought, she chose palliative sedation. Her husband was disappointed, apparently he was expecting her to wake up on occasion so he could visit with her. Her older daughter was about 30 at the time, and was a marvelous caregiver. She knew her mother wasn't waking up again. It took about a week from palliative sedation until death. Of course, she was not eating or drinking during that time.
Lita, I think the making sure the doctor/palliative sedation "DID NOT DECREASE [the] time to death" is just CYA for the states that do not have physical-assisted death (DWD) options. However, once a patient is sedated, they are not eating or drinking any more.
I hope this information is useful.
Madelyn
0 -
Madelyn, I’m trying to understand the precise point you are trying to make. Are you saying that palliative sedation is, in essence, a way of aiding (hastening) a person’s death without calling it physician aid in dying? Are you saying it’s a matter of semantics? I look forward to continuing this conversation if you or others are interested.
0 -
I appreciate this conversation!!! I’m lurking and reading and taking notes. 🙏🏾👏🏾👏🏾🙏🏾👏🏾👏🏾
0 -
Jaycee, I hope your phone call went well.
0 -
Dear Brenda,
first my apologies, as I did not refresh my page before posting, so my comments are a bit out of sync with the rest of you. I had noticed that Jaycee was talking about Compassionate Choices and DWD medications as laws. I was offering another choice for pain control.
The point I was trying to make is that palliative sedation is a choice for people who are in terrible pain that is not being controlled, and do not have the option of DWD medications. That really is all I was trying to say. It is an option for reducing pain. I offered my friend's story as an example. I was thinking of the many people who did not want to die a painful death.
Brenda, you give me more credit for deep thinking. I did not think far enough to consider palliative sedation as a way of aiding or hastening a person’s death, or as a way of getting physician-assisted suicide in a state that's not allowed. It may well hasten a person's death in that they won't be eating or drinking. However, at that stage of disease, they probably aren't eating or drinking much anyway.
I am just thinking about palliative sedation as means to control pain. For my friend, and my family, I want to control pain. I have already accepted that they will die sooner or later. I am not trying to hasten their death. I am trying to alleviate their suffering.
Also, I am reading this over and I see my words are failing me. Brenda, you are a deep thinker and I am in awe of you. I am a caregiver and friend who is helping family and friends through very difficult times.
I look forward to continuing this conversation.
0 -
Hi LoriCA,
I hope you are having a good day. I noticed that you are HER2+ as am I. My diagnosis was about a year before yours and we have similar metastases. I was just wondering how you are feeling these days? I have been on Herceptin/Perjeta/Femara for more than three years now (had taxol and radiation in the beginning). I am feeling pretty well and am still working full time.
I was just curious and I hope that you are feeling great!
Take good care,
Nancy
0 -
Aussie-Cat, thanks for asking. It went well. She called at the exact scheduled time. She gave a short intro and asked some questions about my position and then I did most of the talking. Most of her questions were hard to answer like, "what is your prognosis?" or "does your doctor talk about your prognosis?" With the treatment options right now, who knows? I used to think it was bad for my MO not to be willing to discuss it. Now, I'm not willing to discuss it just because it is so nebulous. I guess she wanted to know when I would be ready to really help them by being close to death. Compassion and Choices is a good organization but still money driven. They need money to carry out their work but they also make money and the people who work for them are well paid. Kind of reminds me of the foundations that support financial assistance for really expensive drugs. They MAKE lots of money. Millions, maybe billions. I donate to CC and they spend a lot of time soliciting more from me. It's annoying but I didn't mention that to the person I talked to yesterday. After the call, I got an email with requirements for me to "volunteer" with them like a non-disclosure agreement, media policy agreement, and permissions to use my story (sometimes with my name) to sign and return. They want a photo and my story. (I told her I had already written it for BCO.) I may send them the story I wrote for BCO's "tell us your stage IV story" thread.
I guess I started the whole assisted dying vs palliative sedation (PS) discussion inadvertently. I had never heard of PS so I read the description Mom posted carefully, multiple times. What struck me is the care the organization that wrote it took to stress not hastening death as part of PS. I almost went back to pick them out and quote them in a post. I may still. I did mention PS to the person from CC and she said the difference is that the physician has control over the PS. The patient has to convince the physician that they want/need it. And they can and do refuse. In the legal states, physician assisted dying, after the script is obtained, the patient has total control. No more asking for permission. I want that but also explained to her that the drugs are expensive (thank you Lita although she said there are cheaper options now in CA) and that taking the protocol may be difficult for me since I am a slow swallower. I've read about the current protocol and, yikes, that is a lot of stuff to get down in a short time. I'd like to pop a few pills and go to sleep and not wake up. But if you make it too easy then the slippery slope ensues. I get it. It's complicated. I hope this conversation continues here. Thank you for carrying on.
0 -
Hi, Madelyn,
No need for apology! I'm glad you clarified the order of posting because I had been trying to understand your comment, wondering if I should consider it in the context of what I had written. I certainly don't think I give you more credit than you deserve! You have made your points well, and I think it's very helpful for people to know about palliative/controlled sedation as an option for alleviating suffering at the end of life. Although the following is most likely obvious, it's still worthwhile saying that palliative sedation might still be a preferred option in states where physician aid in dying is available. Making that choice relies greatly on a person's beliefs and values, among other variables (like the expertise of the hospice team and whether certain hospice organizations support one pathway of care over another).
Interestingly, some hospice programs & MDs will support palliative sedation for intractable physical pain but not for psychological/existential suffering. Some may think ethically, morally, palliative/controlled sedation is more justified when the motive is alleviate physical pain. Some may think that if the person receives enough counseling, and/or medication to address anxiety and/or depression and/or terminal agitation, and/or enough family/caregiver support, then there is no need for palliative sedation. Then you have the issue of family involvement: A significant number of family members simply cannot tolerate their loved one being sedated to the point that interaction is not possible, even if the person who is dying has made it clear that sedation and peace within is the paramount goal. I was initially shocked to discover just how many family members were more focused on their own psychological/relationship needs being met than they were on their loved one's right to have suffering alleviated. I always acted as advocate for the person who was dying, whether it was the type of situation just mentioned or other situations, such as when AND (Allow Natural Death) or DNR orders were in place, but family members called or were tempted to call 911. I reached the point after years of hospice practice that very little surprised me.
A mention of one reason hospice organizations wish to emphasize that their intention/motive behind care is not to hasten death: The stigma surrounding hospice care and misinformation about hospice goals & interventions are significant. I still hear people say that going into hospice care means a person is "giving up," that going into hospice automatically means that a person will die sooner than she or he would otherwise, that morphine use automatically means a person will die sooner than he or she should (or "sooner than God intended"). Organizations like NHPCO or HFA have had to work hard to dispel myths that "hospice kills people" or uses interventions to intentionally hasten death, or morphine use will send one to an early grave. Hospice care is focused on promoting quality of life to the extent desired and possible while also alleviating suffering within many realms. That's often a hard concept for people to accept. I've seen it in practice over and over, and in my own family, when my stepfather and brother died in hospice care (peacefully and comfortably, I might add).
0 -
Jaycee, I'm glad the phone call went well. I can see how it's annoying that C&C asks you for more money when you've already donated. Thanks for sharing the issues you're grappling with and the legal issues. I'm not sure how it compares to where I am in Australia.
0 -
Jaycee, I'm glad you started the palliative sedation and assisted dying conversation. I guess you noticed my comment above about one reason hospice organizations may emphasize their care does not hasten death. Hospice providers tend to recognize that appropriate (symptom control specific) use of morphine, for example, may alleviate suffering and not hasten death, but people--even unknowledgeable MDs--may think that pretty much all recurrent use of morphine that is sufficient to manage pain at end of life will hasten death. Surely there are those situations where "excessive" morphine doses may lead to a quicker death, but hospice (generally speaking) tends to focus on effective symptom management. Palliative sedation itself is not necessarily a method for hastening death. Actually, some of the research I've read found no difference in length of survival comparing hospice patients who received sedation for intractable symptom control with those who did not. Typically speaking palliative sedation is made available when certain conditions are met but also more so in the last days or few weeks of life. Some people write about "early palliative sedation"--sedation for longer periods--but I've not seen much about that practice being widely used. Also significant is that some people choose palliative/controlled sedation WITH artificial nutrition and hydration, for various reasons. So it is not a given that a person who receives palliative sedation will automatically no longer be receiving fluids or nutrition; it depends on the person's choice, often shaped by values and beliefs or even as a compromise with family members, who can tolerate sedation but not the thought their loved one will "starve to death" (another myth about what happens at end of life with regard to taking in fluids and nutrition, when actually the body loses its ability to process fluids and nutrition and may actually experience harmful effects of receiving fluid and nutrition.)
I find it intriguing that the CC rep told you that choice lies in the hands of the person who chooses aid in dying but in the hands of the doctor when the choice is palliative sedation. Perhaps I am misunderstanding the point, but in situations when a very ill person meets criteria for aid in dying and palliative sedation, a medical doctor's assessment (and possibly assessment by other professional clinicians) and approval is needed before either can be provided. Perhaps one difference is that after receiving a prescription for meds to end one's life, a person is free to decide when and if to use those meds? Another aspect I find intriguing is that a significant number of people who obtain prescriptions to end their lives don't use those prescriptions; it's assumed that having that option available is enough to give some people the sense of control they wish to have at end of life. Of course, there are those who wait too long and are unable to manage the meds needed for bringing an end to life. Another caveat: I might appreciate knowing that I will have a doctor's intensive management of my symptoms and needs throughout palliative sedation, which might give me and family members' peace of mind.
Thanks so much for sharing your conversation with the CC representative. I'm an intensely private person and I don't know that I would feel comfortable about "requirements" to "volunteer" my photo, name, and story, for their possible use at a future date. Does the authorization allow you to limit the ways in which they can use your private information?
0 -
Hi Nancy, thanks for asking. I'm really glad to hear that you are doing well on H&P. I was hoping to have a good run on it but unfortunately it seems I have de novo resistance to it, lucky me. It worked well on my liver and bone mets, but it isn't working anywhere else and I'd swear my cancer just feeds off it. D*mn stubborn IBC just doesn't want to get under control, and it grows so fast that you can literally see it spread every day. Once the IBC starts acting up it quickly starts spreading throughout my body. Three months after I finished the first round of chemo it started acting up again and shortly after that it was out of control once more, new mets popped up in new locations, a tumor that's tangled in my brachial nerves was growing rapidly and causing a lot of pain so I was back on pain meds. This time it was resistant to the first chemo we tried and it was spreading too fast to waste time trying another chemo drug. They had saved rads for when it became chemo-resistant (not uncommon with IBC) so we tried frying it to a crisp. For the first month it appeared radiation-resistant too, but we kept at it using a bolus. I just finished 70 Gray to a large percentage of my upper torso. It did shrink the big mass some and appeared to clear up my skin mets. Now I am waiting for enough radiation to leave my body so we can do scans to see how the rest of me did and get a new baseline, but there's already signs that it's acting up again. After 2.5 months of daily rads I was really hoping to get more than 3 weeks peace of mind out of it. For now I'm staying on the H&P because it was working on my liver and bones and I was afraid to not be on any systemic treatment for 3 months while undergoing rads, but everyone is trying to figure out what we should try next. The past seven months had been nothing but bad news week after week and it's wearing me down. I'm doing better now than I was three months ago, but I'm right on the brink again and really hoping we can find something that works. I'm still trying to stay positive about everything, but it's so frustrating.
To tie all that into this thread, it was revived at a good time for me. After my initial flurry of "getting my affairs in order" (when I was first DXed I was given 60 days and my husband was told to call my family in) I had convinced myself there was no rush, that I would have a good run on H&P (hopefully for years) and I stopped worrying about things. Now that I see again how quickly it can take me down, I realize I can't procrastinate on getting things squared away. Bleh, the process of purging belongings and writing instructions for my husband can be depressing, but better to tackle it when my head is in the right place than when I'm in a lot of pain and quickly going downhill, not physically able to do the things I need to do.
I've already had a good taste of how painful the end is going to be for me and that's my big fear. I'm not afraid of dying, just the pain. I'm not sure that I would take advantage of our assisted dying law, but I won't hesitate to ask for palliative sedation. By that time I'll be back on a heavy dose of morphine and fentanyl already, so what's a little more?
Lori
0 -
Lori, are we on another thread together? I really hope that the rads work as sometimes they do given weeks to make changes. My situation was never as dire as yours but I too have a tumour entangled in the neurovascular bundle of the brachial plexus and they hit it hard with palliative rads and 3 weeks later my right scapula released enough that it did not take 2 hours after am pain meds to be able to move. I wish the same for you. And in the end, palliative sedation and no pain. This I would choose too.
Marian
0 -
Brenda, if you read my post again, you will see that I did specify that distinction. With aid in dying, you do have to get an rx from a doctor (and jump through some other hoops) but then it is your choice.
They do give you some choices in how your data is used. I could paste the whole mess into a post but then I'd be afraid I'd be breaking the confidentiality agreement. Which I haven't signed yet. Or done any of the other stuff. I have to let it all percolate through my brain (a slow process) and then make decisions about what I want to do. The two agreements (confidentiality and media) are the same ones they use for their employees and other "partners." I guess with people sharing medical information, they have to protect themselves. I'd like to help them. I agree with what they do. And if you violate any of their agreements, you get tossed as a volunteer but you wouldn't care at that point. I'm just not sure how much I can help them anyway but I will consider it. I don't travel but could talk to local legislators and groups. I was a teacher for many years so I got the public speaking thing down. I don't want to get into any "debate" situations, though. The CC person asked me how I might try to convince someone to change their minds about aided dying. I said I'm not sure I would. They have a right to their opinion. But if they were a legislator, I would say that they don't have the right to make that choice for me. I should have that option.
0 -
Marian you had pm'd me to ask about taxol and how it worked on my brachial tumor since we had that in common,and we chatted a bit about that. I think it was right around the time things started going quickly downhill for me and I stopped posting for a while, so I may have inadvertently dropped out of the conversation and if so I apologize. I had lost complete use of my arm for a few months in 2017 and taxol did work the first time but not this time. The rads worked on it this time, but only for a short time. I got a much higher dose than they would typically use and by the time I had finished the pain was completely gone, the mass had shrunk, and I had full mobility again. I was so happy. But instead of continuing to improve in the weeks following as we had hoped, things started getting worse again and now the pain has returned.
Lori
0 -
Hope you don't mind my injecting a bit of humor here. On the topic of pain, there's a scene towards the end of the movie “Terms of Endearment". Debra Winger as Emma is in a hospital bed dying of cancer. It's time that she can receive another shot of morphine but no nurse comes to the room to administer it. The mother, Aurora, played by Shirley McClain, goes ballistic, running out into the halls shrieking, pounding on the nurses station and demanding that they give her dying daughter her overdue shot of morphine: "I don't see why she has to have this pain....It's time for her shot, do you understand? DO SOMETHING...MY DAUGHTER IS IN PAIN! GIVE HER THE SHOT, DO YOU UNDERSTAND ME? GIVE MY DAUGHTER THE SHOT!!"
Now my husband is a don't make waves kinda guy, polite and respectful to medical personnel. I described the above scene in the movie to him, even acting it out as I was telling it and then said, “If there's ever a time I'm in the hospital and someone isn't bringing me what I need to alleve my suffering,this is how I want you to react."
A bit of humor. But I wasn't joking.
0 -
Very interesting thread about palliative sedation and aid-in-dying. I too hope that I can control things when the time comes.
My friend, well apparently she's back on the ventilator. And apparently she did discuss end of life wishes with her husband. But from the other side, it's one thing to have had the discussion and another to actually agree to "pull the plug" as it were. That's a really really difficult decision to make. Particularly when she's not dying of cancer. And when the entire family is in a turmoil. [I don't know enough about catholicism to determine whether religion is playing a role here]
I'm thinking two things as I hope I'm going to a funeral soon. One is that even if you tell your spouse or designee what you want it doesn't mean they'll have the courage when the time comes. So either have the discussion with the entire family (which I bet she didn't -- teenage children), or pick someone who can do what you want in the face of opposition.
The second is that she's asleep. She has no idea what's happening. She's not in pain so far as I know. So maybe her family needs this time to come to grips with the situation and see things more clearly. And maybe they should have that time. But in the meantime a lot of her friends and co-workers are suffering too.
If we're dying of cancer anyway, it's just a matter of a small amount of time. That should be easier on our loved ones.
0 -
Jaycee, thanks for allowing me to clarify what I was trying to say about the role of MD assessment/approval and how it might relate to a person's exercise of choice. When you mentioned, "...after the script is obtained, the patient has total control," I thought of one of my friends who lived in a state with legal access to PAD (physician aid in dying) who had assumed she would just ask for a prescription, be automatically approved because she had a life limiting illness, with very poor prognosis, then be on her way with prescription in hand. She had not realized that her physician would involve her in an assessment process that might or might not lead to approval, or that her MD might not agree to be involved in the process at all, citing objections to PAD. In part I wanted to make sure that others who read this conversation don't assume that gaining approval is a relatively simple process--ultimately reflecting the epitome of a person exercising her or his choice at end of life. I noticed in your follow-up post that you mentioned jumping through some hoops, so I see that we share the same understanding, and I'm glad we can make sure that others do. I think we already agreed that at least one difference (between PAD and palliative/controlled sedation) is that a person is free to decide when and if to use meds after receiving a prescription.
And thanks for adding further comments about your experience with CC. "The CC person asked me how I might try to convince someone to change their minds about aided dying. I said I'm not sure I would. They have a right to their opinion. But if they were a legislator, I would say that they don't have the right to make that choice for me. I should have that option." We certainly agree about this issue! Unfortunately, so many of my legislators don't agree one bit, hence the need for advocacy. Thus far I get the response from my legislators that more or less says, "Thanks so much for sharing your input. I will take it into consideration when I decide what is needed to protect the welfare of those in our state." So solicitous, condescending, etc.
Lori, I am sorry to hear of your struggle and finding yourself on the brink again. I hope you and your team will find something that works, too. You make a good point when sharing that you would like to make decisions and take action when your head is in the right place. So often we think we have adequate time to postpone decisions or may have more energy later, only to find ourselves quickly pushed beyond what we can realistically ask of ourselves to manage. Exploring your treatment options while also making your explicit wishes known about control of pain and suffering at end of life with your MDs, while stressful, might serve your best interest in the long run. My oncologist tends to jump to reassurance mode when I talk to him about my end of life concerns and wishes, but I don't take comfort in that. I want to know that he understands and that I or my husband don't have to fight a battle we didn't expect when we reach a critical juncture.
0 -
Hi, Divine, long time, no see. Here we are, still. Sometimes I am beyond amazed that I am still here.
I know that scene from "Terms of Endearment"! IF I recall correctly, there's a line that Aurora/Shirley McClain says in response to a nurse giving her some sort of mealy-mouth explanation for why she is not acting more aggressively to alleviate Aurora's daughter's pain: "AND THEY LET YOU GET AWAY WITH THAT?!?!?" She's just not willing to accept her daughter has to suffer, for any reason, and that she has to witness that suffering. That made such an impact on me at the time. My husband is a low-key, laid back kind of guy, personally and professionally, but he's had years now of being an advocate for me when I'm in difficult to control pain. Too often I land in the ED because of uncontrolled coronary artery spasms, during which it's hard for me to think clearly much less communicate effectively. Over time I've observed my husband becoming more assertive and occasionally being demanding (but not belligerent or threatening) as he advocates for me receiving care needed to reduce further damage to my heart and get pain under control. Once I am out of crisis, I remind myself that these occasions, while deeply painful and scary, are teaching him how to advocate better for me at end of life. He knows I already have the skills to do that for him (and I mean in no way to minimize the psychological burden of being in that position.) So we both have more peace of mind about that issue, recognizing that we also may find ourselves in situations we may not have predicted. I always tell him to do the very best he can and not have regrets over things he cannot control. Practice may not make perfect but I sure hope it makes "good enough." I imagine your husband will do "good enough" given all you've done to make your wishes known. I've always admired the way in which you have slowly helped him to think about death and dying.
Pajim, I'm so sorry to hear that your friend is back on the ventilator and that her husband is struggling with what to do, even though she made her end of life wishes known. You make such a good point about choosing an advocate who will be able to handle the demands of respecting one's wishes! I hope the medical team is offering family meetings to help the family adjust to the situation and clarify how best to respect her wishes. One thing that might be done to help ease the family into "acceptance" is sequential withdrawal, which allows for one intervention to be withdrawn at a time instead of disconnecting all life prolonging measures at once. Feeling like one is "pulling the plug" is often more than some people feel they can bear. I hope that your friend at the least is comfortable now and that her eventual death will be peaceful.
0 -
0
-
For just over two years I have had a daily efriendship with a lady with pancreatic cancer. She pulled out all the stops to beat this monster, but there is no beating it. Over the span of those two years I have seen her life change. She started as a pudgy cheeked lady of around 150 pounds. Now she is a skeletal wraith of less than 90 with a belly that protrudes as if she's pregnant, the tumours have gone wild despite chemo every other week for almost two years straight. She is in terrible pain. She can't stop vomiting. Neither food nor water will stay down. Her bowels have shut down so I will leave to your imagination what she's vomiting up. Her long emails are down to three or four sentences. There's no coming back from this unless there's a miracle. I check my inbox every hour to see if there is an update, but there is nothing. I feel sick.
It makes me ask myself, what is the point where a person (and by this I mean myself) decides to pull the plug? What possible purpose, what possible redeeming virtue is there in dying like this? This is a gruesome obscenity. She is not in a hospital or hospice, although she might be as I type this, she was avoiding the emergency room because of long weekend wait times. As she said, she doesn't want to die in an emergency waiting room. But when I read that 30% of early stage breast cancers will go on to recur at some point, I ask myself, what can I do differently so this is not my fate? Not the fate of those who love me and have to witness this terrible drama of horror. Honest to god, if someone just up and drops dead of heart attack they have won the lottery. Shock is bad for those left behind, but mind numbing horror is another thing altogether. I ask myself, will I have the balls to admit when the end is coming and will I have the balls to pull the trigger, so to speak, to spare everyone, myself included, this dreadful end?
It has been extremely difficult over these last months to know what to say. Our emails have been pretty raw. I ask myself, how real can efriendships be? Well, whatever the answer, ours was a no holds barred exchange. She was able to say to me things she could not confess to anyone else. I listened. But mostly I felt like a useless idiot because there were no words of comfort, no words of wisdom, no prosaic prose to utter as I waved my hand and made it all better. Nothing has made this better. All I have been able to say is, oh my god I am so sorry you are enduring this. This has left me groping with how inadequate I am but here's a little secret; this isn't about me. It's about her. So I suck up my mumbling, mute mouth and show up to listen and witness. For her. Not me.In Canada we have assisted death. But you have to get it organized beforehand. This is an apocryphal warning to me to never forget the slithering foe I'm up against, to not let my guard down, to cross all my i's and dot all my t's. But it scares me. It scares me to the core of my being. I am defeated and bent in the face of this. Her last words were, don't put anything off, do it now. I keep checking for another email. Over and over I keep checking.
0 -
Runor, I'm sorry about your friend, I'm very touched with your post. You said to me once that we don't know how we will die. I pray every day for an unpainless death for all of us. I'm very sorry
0 -
I am reading the posts on dying with great interest. I have been thinking, what if I went into cardiac arrest, related or not to my cancer, do I want to be resuscitated? We dont know how we will die and we fear terrible pain in dying. But I have had friends and family who died of their cancer without pain, they lost consciousness, or systems just stopped working. My mother in law was lucid and clear and pain free hours before she died of stomach cancer. My friend who died recently of liver cancer became unconscious as mets and infections became uncontrollable despite treatment - again no pain or mild pain only. I am not so afraid of pain because it can be treated with medications - I believe - and increasingly so with current meds. So, where my head is right now is, if I need pain meds, like morphine - which can speed death - then I will take them. But if I dont have severe pain, if Im not completely miserable, I will just follow my body's path and not intervene except for comfort, that is, palliative care. I THINK if I went into cardiac arrest now, however, I would want to be allowed to die. That means a DNR should be attached to my medical files, which I dont yet have. But if I had an infection or broke a bone and was still cognizant and brain was functioning, I would want treatment. Right now, 8 months since I found out my cancer had returned to my bones, I feel good, pain in ribs, sternum, back is much decreased since on meds, and I am trying to do things on my bucket list, spend time with my 3 children, etc., but it is hard to be sure what to do if e.g. my heart stopped working correctly or I was unconscious for unrelated reasons to my cancer(I have been getting heart symptoms and am being evaluated, which is why this is so much top of mind). I do not believe, personally, in assisted suicide, but there are decisions to be made about end of life care that are appropriate for me to make that I am struggling over. Most impt I want to be in charge of deciding and not have it be my children or husband who have to decide whether to pull the plug. I told DH recently that if I am conscious, Im still in charge, but if not, then he is to follow my advance directive and that would include a DNR order. He was surprised, and I said, well maybe but thats where I leaning.... (As I said above).0
-
runor, I am absolutely positive you DID give her words of comfort and wisdom. She chose you to tell things she would tell no one else. There is a reason for that. You are providing things no one else can. A lot of responsibility but something you have taken on because you can, you do and you will see her through.
0 -
I've already decided I'm going "VSED" (Voluntarily Stopping of Eating and Drinking) because Physician Assisted is too expensive (they make $$ off you coming and going). VSED is a good option for people who don't want to off themselves for religious reasons...your body shuts down on its own and you go naturally. Of course, you can elect to have palliative sedation to help with pain.
It's just terrible.You wouldn't let your dog or cat pass on like we do in the USA. Dying a protracted, miserable death doesn't make you a better person.
0 -
Runor, sorry to hear about your friend and she is right about not putting things off. I think of all the time I wasted working on Saturday’s and almost never taking vacations, well, I am now.
Funny, I got a very truthful but somewhat uncomfortable chuckle from a quote I saw just 10 minutes ago. “You’re never more alive than when you’re almost dead”.
0 -
runor- keep “holding her hand” and walking her home. That is what she needs most and many people can not do it- it is so hard.
0 -
Runor, My heart is breaking for you and your friend. There are no words. I'm so very, very sorry. I will pray for you both because honestly I don't know what else I can do. Hugs! Theresa
0 -
I heard this song by the Ramones this morning while DH was driving me back from my blood labs...
"Twenty twenty twenty-four hours to go
I wanna be sedated
Nothing to do, no where to go oh,
I wanna be sedated"Just put me in a wheelchair, get me on a plane
Hurry hurry hurry, before I go insane
I can't control my fingers, I can't control my brain
Oh no oh oh oh oh..."Ba ba baba, baba ba baba, I wanna be sedated
Ba ba baba, baba ba baba, I wanna be sedated"I think I have the CD somewhere, and I want this played when I'm on hospice, with palliative sedation, waiting to transition home...
L
0
