Choosing to live or die....

[SkiFletch]

Definitely a lot of courage required to make this choice. I haven't myself decided exactly what sets of circumstances I will choose enough is enough, as that is always a moving target. Having been close to death once before in my life long before I had cancer, I have however decided on the "how" I wish to go. Like many of you, I think the toughest part is going to be in convincing my family of the decision. I don't need their help, but like BB said, I don't want to hurt them either with that decision. I'm just hoping they will be mature enough to accept it.

[Gaelen]

Ashlee, the beauty of this world is that we can respect the choices of both of your friends. But one thing I've learned (and re-learned) in the last three weeks since I've made my own decision to stop chemo is that the old saw about "the best laid plans of mice and men often go awry" is scarily true.

Everyone takes a different approach to his/her own death. And the hard-wired parts of our personalities often come out in our plans...even if, in the hard light of day when things actually get critical, what we THINK we want or is best for our loved ones is NOT the only option that will work, and not necessarily the option that will leave our loved ones most at peace.

The control freaks among us will want to micro-manage the process in the name of causing as little distress to their families as possible. I don't mean to suggest that filling out an advanced care plan, creating a will, etc., isn't something that shouldn't be done, discussed, updated and re-discussed as long as we are alive. It's important to make our loved ones' decision-making process as easy as possible by communicating our own wishes as thoroughly as we can in advance. However, when the time comes, all of us are living in dreamland if we think that how WE think our families are going to react to our deaths or our death choices is what WE think they will do or want. The bottom line? Our perceptions of what is "best" for our families is not necessarily best, and our perceptions of how they will feel is NOT necessarily accurate.

So - those who want to manage their deaths in ways that will have minimal impact on their families might be surprised to realize that no matter what their efforts, the effects on their families WILL be major, their efforts notwithstanding. Suicide? Planned death? That might be easy for you but even more destructive for a family than a patient can imagine...that's why there are as many or more suicide bereavement groups as groups just for those who are dealing with grief about death from non-suicidal causes.

I will be starting a thread about my adventures with hospice at some point, and things may get clearer for some people. Suffice it to say, I've learned that hospice care in many locations can be less about how the patient wants to die and more about what the hospice group can provide. If the patient wants something different than what the agency can provide, s/he may find herself SOL. As someone who's been a peer counselor for the last 8 years, and who has steadfastly recommended that patients contact hospice sooner rather than later to utilize the survices available, part of me feels like, based on my own experience, I've been urging actions to hospice under false pretenses.

The decision to stop treatment is never easy - But one thing should be clearer - while, as was the case with one of Ashlee's friends, the decision to stop treatment = the decision to die, the decision to stop CRC treatment is seldom that much of a straight line. I've had some very rough days in the last three weeks, and others that have been ok. I am still not living any semblance of my life...but I ain't gonna die today, or tomorrow. The process of stopping treatment should begin the process of preparing for the end of your life. I've placed my dogs and cats, had conversations with friends, am planning a "happy hour" to distribute a lot of things in a party atmosphere BEFORE I am too sick to see people who are far away. I am settling things. That doesn't necessarily = dying, at least not today. I hope this part of my life and the things I choose to do with it help those around me figure out how to deal with the world when I'm not in it.

But in the end, the only thing any of us can do is HOPE that we made the right choices in that regard. There will still be people left unsatisfied, with feelings about us that haven't reached closure. We can't MAKE that happen, folks. They gotta get there on their own two feet, in their own way - with or without the "guidance" of our actions and plans.

[lohidoc]

These are issues that anyone with a diagnosis of cancer (and indeed even you have not been so diagnosed) will think about, whether we discuss this with others or not. Those of you who have read some of my posts will know where I stand on this. I like Bownbagger's story about the woodsman going off to die in his own environment. There is so much dignity in that, and I know of other stories like that. The hardest thing is explaining your choice to your family, especially younger children. I think that tactful honesty is the best approach. There would surely be comfort for them knowing that their parent died in a manner of their own choosing. But as Gaelen says, how your loved ones will cope with your death is not in our control. It may have more to do with who they are than anything you can do for them. One further consideration that may apply to some is that if you have a life insurance policy there is often a rider which provides double indemnity if death is accidental.

[Patience]

One further consideration that may apply to some is that if you have a life insurance policy there is often a rider which provides double indemnity if death is accidental.

But, there is often a cancellation clause in the case of suicide (for example, a 2 year waiting period).

This is such an important and sensitive topic, thank you to those who have posted for allowing us others to benefit from your insight.

[Laurettas]

Any of you ever have a "beloved" pet die at peace in your arms? When my dog Zoki gave that look "enough" I called the vet to come. One shot made her peaceful, me singing you are my sunshine The next shot stopprd her heart. Why can't humans have the same peaceful way to go!! I heard OR was the one state to this, what a terrible shame.

This is an extremely sensitive topic and I hesitate to comment, but since it is something I have been reading about for years, I wanted to throw out a few thoughts. Most of my ideas come from others who supposedly have knowledge of these types of practices which are carried out in other countries and the states in which it is legal. They may be wrong, but I have heard the same stories from more than one source.

First, in some countries that have had legalized assisted suicide for some time, many of those being euthanized are no longer consenting. It may even be the majority in those countries now. Hospitals, doctors and sometimes family members are making the decisions outside of the wishes of the patient.

Many who look into assisted suicide are merely depressed or lonely or in pain and once those issues are addressed, they no longer desire to end their lives. Even though the law in many places requires a life expectancy of six months or less, a number of people have committed suicide who did not have a terminal illness at all.

Sometimes the right to die can cause the elderly and ill to feel an obligation to die. In other words, since it is legal, one can feel the obligation to die in order to not be a burden to others. This decision can be made even if the person himself wants to continue to live.

Some say that in the states in which assisted suicide is legal, those who choose to die naturally are not always given the pain control that is available in other places.

That is what makes this topic particularly difficult because once the decision is made that it is all right to take one's own life, it is a very short step to decide that it is all right for others to decide if someone should live or not. It is a line that I think we need to be very careful before choosing to cross it.

[Gaelen]

I like Bownbagger's story about the woodsman going off to die in his own environment. There is so much dignity in that, and I know of other stories like that. ... There would surely be comfort for them knowing that their parent died in a manner of their own choosing.

This statement (underlined) illustrates my point exactly. WE might feel some comfort knowing that it was possible for this person to die in a method of his own choosing, WE might see the beauty in dying quickly or what we imagine to be painlessly in a sudden accident situation. But WE are closer to our own deaths, and WE'VE had a lot of time to think things through (if we chose to do so.)

We are fools if we assume that our responses to those kinds of death scenarios are how our families will responsd. We are in one position (the dying) while they are in another (the grieving). Even if we pose the scenario and ask, they cannot answer w/the perspective we feel because they aren't looking at the issue from the same place we are. To assume that what comforts us will also comfort our loved ones is just ... well, you know what you get when you assume.

Sure - we share some common things. Maybe some of our loved ones ARE on board with what we think we will find comforting at the end. But to assume that going in? Nuh-unh, no go. When you assume, you make an ass out of you and me. When it comes to death and dying, that can be a snafu on a very grand scale indeed.

Non-death example: I've mentioned that I'm in the process of cleaning out my house. Why? Well, I've participated in two gramma and one great-gramma post-morten clean-out, and they can be hilariously brutal. Gramma F. left in her tiny apartment a hoarder's quantity of stuff...including about 100 oval boxes of Intimate dusting powder. We were tossing them all until one broke...and we found $100 in small bills rolled up inside. OMG, what a PITA going back through each of those boxes, and every other box after the discovery, to ferret out her squirreled-away cash.

I have hundreds of dollars in work clothes that I want to donate to a charity that maintains a job-interview or dress-for-success closet for women in need, on assistance, or who've been abused. And I'm gonna do that. I have hundreds of dollars of dog training equipment only attractive to one segment of my friends. I have over 400 cookbooks, as well as CDs, DVDs and even tapes. I have some very specialized cooking equipment.

And I have a lot of friends who want to see me, but I'm not strong enough for a parade of visitors.

My thought (which initially met with some resistance, but is now gaining popularity) - have a PARTY! It's gonna be around happy hour, so that people who work can get here, people who don't work can get here, and people who teach can fit it in between classes. It's gonna be during the week (we think...date TBD) so we don't conflict with dog shows. And the rule is - bring something to share (food/drink) that you MUST take home with you, and you MUST take something of mine with you when you leave. It can be one thing - or 50. But the point is to clear my house of the things that appeal to special interests so my family has less to clear out. The stuff planned for my family will be set aside - the rest of the house is fair game. Whatever is left will be donated (if possible) or just cleared out by an estate sale/recycling company. Sure there will be some stuff to clean out when I die, but MOST of it will be gone (and there won't be any dusting powder bins full of cash.

This comforts me - and my friends, even those initially reluctant, like the idea. They get to see me, they get to choose a piece or pieces of me for remembrance, I know my stuff is going to good homes where it will be used. This is a rare example of a situation that is comforting to both the dying and the soon to be aggrieved. But as with every solution, not everyone likes the idea. However, I'm happy that enough people are liking it that it's a good choice.

However, for the most part, we don't get to choose what will comfort our loved ones, folks.
And assuming what comforts us will also give our loved ones comfort is too often just not a good plan - especially when in making our plans, we try to "minmize" their pain and suffering according to our perceptions, and not theirs.

[anntg]

I do wish that when people choose to make sweeping statements, such as "Some say that in the states in which assisted suicide is legal, those who choose to die naturally are not always given the pain control that is available in other places" or "a number of people have committed suicide who did not have a terminal illness at all", that they would back these statements up with some facts. It's totally ok to express your opinion on things, but if you want to suggest that what you are saying is reality-based, pls. include some statistics or studies to support your comments. It is in fact a sensitive topic, and some of us have actual, real-life experiences with assisted suicide. I personally am grateful beyond belief that I live in a state in which assisted suicide is available. It was a God-send for someone I loved very much, and I am very glad it will be available for me if and when my time comes. It's my life, and I don't want the beliefs (not facts) of others that I do not share making this highly personal decision for me. Ann

[Rob in PA]

Good discussion, terrible topic but one that we can't ignore. I guess I will know when that time comes for me. I just made the decision to not have chemo after recently finishing a round of SBRT. Docs agreed to let me wait three months. Hope I didn't make a bad decision but you have to walk a tight rope between quality of life and quantity of life. I remind my family and friends to remember that the chemo is killing me too, and when I say I want to take a break it does not mean I'm giving up....rather, that I am making some very tough decisions on getting the most out of life that I have left.

....and to think I used to think I had tough decisions to make at work!!!! Ha.

[hannahw]

Why can't humans have the same peaceful way to go!! I heard OR was the one state to this, what a terrible shame.

The State of Washington also has a law that gives patients the right to die, it was passed about three years ago. In the first year about 65 patients received the medications, but not all of those who got the meds chose to use them. In the second year, about 80 patients took the steps necessary to receive the meds. Again, not all the patients actually used the medication. Some reported that getting the medication gave them peace of mind. They could use it if they chose to use it, or not. Demographically, patients seeking the information about obtaining the meds were mostly over the age of 55, mostly insured, mostly married, mostly cancer or heart disease patients, mostly with at least a college undergraduate degree and mostly sighted things such as loss of control and loss of quality of life as being factors in their decision.

I recently observed the process that was undertaken by a man with Huntingtons. Huntingtons is terrible. It has a strong genetic component. In the case of the man I met, his mother, a brother and several aunts and uncles had already died from the disease. He was near the end of his life and quite frail. He had a difficult time swallowing and speaking. His body was in constant motion. Whether awake or asleep there was no relief from it. He could do next to nothing for himself and lived at a nursing home so he could receive full time care. I would estimate him to be about age 50-55.

I observed his first meeting with a doctor who supports patients having choice. The man came to the appointment with his brother and his son. They had had to travel several hours because while it is legal in Washington many doctors refuse to be involved. Initially, the man seemed quite frustrated and anxious. The doctor spoke to him about his disease and what he wanted. The doctor did a full exam and laid out the guidelines. The doctor also spoke to the brother and son about their own feelings about the situation. Both said they were upset by the choice being made but that they would support their brother/father in whatever decision he made. It was quite an emotional moment, watching these two family members put aside their own sadness to support this man they so deeply loved. Anyway, over the course of appointment I watched something that struck me as amazing. As the man developed trust with the doctor, he began to relax. As he realized the doctor was there for him no matter what, the constant motion in his body lessened somewhat and he seemed to reach a place of peace. It was powerful, just watching this physical, subconscious response to being supported unconditionally.

I don't really know how I feel about the subject personally. I think it would depend on my specific circumstances. Hopefully, as in Washington State, there are appropriate safeguards in place to prevent coersion, to ensure the decision belongs to the patient and the patient alone. But the one conclusion I drew from my experience is that no matter how I feel about it personally, I would not want to take the choice away from someone else. I have no doubt that this man was making the choice that was best for him. At the very least, I have a new appreciation for the value of taking this topic out of the shadows and allowing people to discuss it without fear of being judged for it.

People speak sometimes of natural death, but with all the advances in medicine, it seems that natural death is becoming more and more rare. So, while ending your life with pills may be unnatural, we've probably reached a point in the evolution of medical science where some medical intervention is both unnatural, and detrimental. There are lots of things medicine can do, but it seems like ethically the medical community is still learning how to help patients decide what to choose for themselves individually. It's interesting because I think often the first impulse is to do everything, but it seems the "do no harm" credo might most often apply to knowing when to stop because proceeding does harm. It puts doctors and patients in difficult situations.

[Suze]

I don't know what happens in other countries, but here in Oregon the "death with dignity act" has been followed with transparency and honesty. There are several steps that have to be followed, and, as Jaynee discribed in her state of Washington, the people involved were well aware of what they were doing, and why. I voted, twice, for the act, and when the time comes, I may well choose it. Like others, I may ask for the pills, and not use them. Knowing that I can is the most important thing. "Of all the wonders that I yet have heard, It seems to me most strange that men should fear;
Seeing that death, a necessary end, Will come when it will come." There is a Shakespeare quote for everything. Susan

[Laurettas]

anntg, I was just going from memory with stories I have read over the past 15-20 years. Here is one link with some of the things I mentioned:

http://www.patientsrightscouncil.org/site/oregon/

[Terry]

I always tell people, making all the decisions we have to make is hardest thing about this disease (as well as other diseases).

I just pray I will know when the time comes to stop fighting. I did get my DNR so if my heart stops my fam has it here and we don't have to needlessly go through that.

[anntg]

Thanks for the link, Laurettas. The Patients Rights Council has its own agenda concerning assisted suicide, so it's not surprising that the studies they choose to highlight support that agenda. The whole thing boils down to who gets to decide what happens to a person's physical body in life, the person or the government? For me, it's always the individual's right to decide whether or not to end life, especially in the case of those who are terminal. Everyone is entitled to their beliefs, but those beliefs should not determine the rights of others. You don't want to end your life, then great, that's your choice. I want to end mine, that's my choice. And again, I just say I'm glad I live in a state that supports the rights of the individual. Ann

[DaniMags]

I am so glad this thread has opened up. I have been struggling to post on this topic as I wasn't sure how I would be perceived. I have a sister that has Stage 4 Breast cancer and we have talked about it between ourselves just this morning. I am in no way as bad off as some other people but I am saying that today, two days before my next treatment. Ask me then and I will have a different outlook.

I am currently dealing with such a bad reaction to Erbitux that my entire face is bright red and my eyes are swollen to the point that I can't see my eyelashes in the morning. It is extremely painful. It has been ten days since it started and I have an appointment with my onc tomorrow. I'm sure they will decrease my treatment. The point that I am trying to make is that I spend 10 out of 14 days having nausea from the chemo (we are trying to tweak my meds to overcome it) plus I am dealing with this horrible facial problem. On my low days, I wonder if it is worth putting these toxins in my body. What am I trying to accomplish? I'm making myself sick in one way so I'm not sick in another. I try to keep my life's blessings in the forefront of my mind, one of which is my wonderful 19 year old son. I owe it to him to fight. For now.

Thank you all so much for opening up and sharing this very special topic. It made me feel so comforted to know that I am not alone and am not so selfish for having these thoughts.

Dani

p.s. I don't know if we can or how to post pictures on here but I do have some on my blog ( www.carepages.com/MyUglyCancer )

[Laurettas]

anntg, here is another link, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1126394/ which talks about the fact that in the countries in which this has been legalized for a while, the state has stepped in and taken over the decision-making process.
I have read about many handicapped groups who are fighting against the legalization of assisted suicide because they fear that others will make that decision for them, against their will. We need to look at the big picture and how it plays out in reality and not just think about our own personal situations.

People have the right now to refuse treatments and to receive large amounts of pain medication that could ultimately shorten their lives. Do we really need to go that next step? It is something that concerns me and I hope that we look at the situation from all angles and for all people before making any decisions at a national level.