hello welcome to moral politics our producer is bill alford and i'm your host valerie to rico in this session we're going to be talking about death with dignity who decides how you die here with us is rob miller who is the director of compassion and choices for washington state thank you for joining us it's a pleasure to be here valerie could you start out by just telling us how you got involved with this issue it's such a controversial issue and my guess is that it has something to do with a personal experience it did back in one thousand nine hundred four my long term partner was diagnosed with with aids and  proceeded to die e t months later unfortunately his death even though he was on hospice was very difficult there was a lot of suffering involved and the suffering couldn't really be managed and i'm sorry to hear that it was very difficult and during the entire period i was thinking there are there has to be a better way there has to be a way to allow someone to to decide when enough is enough is that what he wanted he did he actually had said to me and his family when he couldn't walk anymore that he wanted to die and that's when the time came  i asked his hospice provider well isn't there something we can do to honor his wish can't we we can't provide medication that he can take to end his life and the hospice said no we don't do that were an organization that neither hinders nor hastens the dying process and we we we can't provide any information about that later on i found out that the compassion and choices of washington existed even before the passage of the death with dignity act in two thousand and eight and they could have provided information to us about choices he had that would have helped him not have such a prolonged and miserable dying process and so i felt very betrayed after the fact i when i found that out i know so many people who say i'm not afraid to be a dad but i am afraid of the process the whole idea of having control over what's happening to you in a situation where you know you feel like everything's out of control you know it's the illness that rules your life it's the illness that takes away your ability to enjoy the things that you used to enjoy just giving someone the the means to say ok i'm ready to go and i want to go now this is when and how and who i'm going to die with provide such peace of mind to people  it's sort of like insurance if you will i mean if you have fire insurance you don't run out and burn down your house you you have the peace of mind of knowing that if your house burns down you know you have you'll have another place to live and and so analogy what this is about is being able to say if i can't stand it i have options right exactly and interestingly about between a quarter and a third of people who actually go through the entire death with dignity process and even those who acquire the life ending medication choose not to take it so it's really not about ending one's life it's about having control and peace of mind the people who are opposed to this have they not experienced unbearable pain i just don't understand how somebody could say i'm going to deny you the ability to make choices about your own body well when i was working on the initiative one thousand campaign in the washington death with dignity act what i came to realize in debates and editorial board meetings with opponents present is that really opposition is primarily religious in nature there are maybe a few people who have professional or philosophical reasons for opposing the choice but the primary opponent to death with dignity is the catholic church it's organized religion where does that come from well that comes from catholic teachings i mean if you look at the catholic ethical and religious directives for health care and these are directives that are pretty much the rules for the provision of catholic health care there are strong condemnation for things like abortion for you know ending one's life and you know it's just contradict half the teachings and i respect their right to disapprove of death with dignity and so we have this choice here and it's legal in oregon and vermont through the legislature or or legislature of oregon through the initiative process and then montana and part of arizona through the courts so  at least here in washington the voters said it should be the person who is dying not the government not religious leaders not anyone except for the actual person not somebody else's religion not somebody else all right if a person is mentally competent terminally ill with six months or less to live he or she can use the law so long as they can find the two participating physicians and pharmacy required to you know to participate and yet even here as i understand it in washington state with the voters having approved this death with dignity bill saying individuals should get to decide at the end whether they can stand the pain or not they should get to decide when they're done that the catholic church still has tremendous power to prevent people from being able to utilize that process that's true the law itself actually allows providers to opt out of participation and part of that opting out is the right to prohibit their physicians and pharmacists from participating in the death with dignity act so when you say a lot of providers to opt out you're talking about health care corporations opting out exactly so we're talking in washington about franciscan catholic health initiatives there one in the same providence and peace elph three very large catholic health care systems that have been expanding across the state of washington so all of those catholic health care providers prohibit their physicians from participating the pharmacist from filling prescriptions and some of them even go so far as to try to prohibit discussion and referrals about the option of death with dignity in their nurses and the hospice social workers and  everyone they employ so the patients don't even know that they have twice is it it's back to your story again right and that's one of the things that i find so objectionable i mean informed consent the idea that you understand your choices but say if you're going to have surgery a surgeon tells you this is what will happen if you don't have surgery these are the risks of of what could happen if you do have surgery this this principle of informed consent is one of the most important principles in the practice of medicine and so if a person who is dying isn't aware of their end of life choices like i wasn't aware of our of my partner's end of life choices and he wasn't aware of them if you're not aware of them you don't know you have the right to them and if you don't have a if you don't have the awareness of your rights then they don't have the right just on having that choice yes so information denied is a choice denied in my partner's case he could have he could have been palliative lisa dated which is a term that were a person is the data to unconsciousness for the rest of their life because they're suffering a so so difficult to manage that the think they're there possibly less likely to approve it for for patients because they see that it might be crossing the line in some way and be considered some form of like slow euthanasia and part of this is this whole concept of redemptive suffering the vinci code right that people who sell flagellate have made themselves on the back i'm thinking about the story of mother teresa telling a dying patient to think of his pain as the kiss of jesus and as the story goes the pain that patient said tell him to stop kissing me but this idea that suffering somehow atones for sins that it somehow makes that man's for the badness in the world that somehow by suffering we make the world better the directives they're not followed literally i mean some of them there's one that says you know that a patient shouldn't be denied you know consciousness through such things as medieval people and frankly you know i know and work with many you know excellent clinicians palliative care providers and you know hospice social workers and nurses who who just cringe when they when they hear that directive or encounter that directive but so in practice i'm not sure how much that you know truly applies but the problem is that it's sort of the culture of the catholic face that permeates the practice of medicine and so well even the thing is even if it's not applied literally in tugs in that direction right it tugs in the direction of providing just a little bit less care hesitating a little bit longer when somebody says i need more pain meds the notion that pain is somehow a good thing every dented thing as you said it's medieval it's also i don't know you know people ironically christianity also teaches that pain is the essence of punishment right it's kind of the most evil thing people could think of those medieval lines and iron age minds could think of when they were trying to say what's going to happen to bad people after they die right they're going to experience eternal suffering that they have no control over that's the definition of hell are they just putting people through hell well you know there are a lot of good hospice and palliative care physicians and nurses and social workers working for you know catholic health care providers and you know to be honest i think most of them do a pretty good job and you know they're trying to manage a and  symptoms you know just as secular providers are you know but i think that that the culture of the catholic church does permeate the provision of of of of medical care it certainly is having a negative impact on patients ability to use the death with dignity act their prohibiting all their physicians from participating they're telling their their nurses and social workers who were who are working in hospice you can't refer patients to compassion and choices of washington because they might help them the way patient choices are getting breached is one that there are that they in these catholic health care corporations they they they forbid their providers so it's like the corporate conscience trumps the individual providers conscience right and they tell their providers that they can't participate in a patient's decision to end life on their own terms or to kind of request that kind of full range of palliative care the second thing i'm hearing is that they have these gag rules that keep providers from even being able to say i can't help you with that but let me give you the name of someone who can when a patient asks about it and when a patient is thinking about wanting to have some control over their own dying process right that's a good summary those are the really thought the two major issues there's a third issue and that third issue is that there are regions in washington where catholic health care is so dominant where they have a near monopoly on the provision of health care where patients can actually not find any participating physicians anymore and we have a problem like that in south west washington in clark county where vancouver washington is before piece health took over south west medical center there we had five or six physicians willing to participate in  takeover of southwest medical center now we have zero i don't think people most people know that peace health is catholic or that it's controlled by religious directives people just assume that their doctors are going to give them the best scientific advice you know kind of the most modern information available that they're going to give them a full range of options that when if i don't know what i need to know my doctor is going to know what i need to know and tell me people assume that they're getting the full range of what's available to them when they when they talk with it when i talk to the doc they do they have great trust in their medical providers and i'm here to save you should stop making that assumption you should ask your provider is there anything that you're not permitted to discuss with me is there any information that you're withholding as a result of your employer's policies especially around reproductive health issues and of life issues because these are the two areas where these policies most conflict with sort of the general values of your average washingtonian religious directive some with the sound that other people need these religious values that the catholic church imposed because they don't have the use of their own but people do have values of their own will the imposition of one religion's values on people who don't share those values is to me it's a form of tyranny the idea this idea that this is the one true faith this is these are these beliefs that that we hold dear and therefore they must be imposed on people who don't know better i find that it makes me very uncomfortable that sounds so full of yourself right i think that they need to be imposed on people who don't know better i think that's the problem i mean people actually do know what they want at the end of life people who don't have let's say let's say they don't identify as religious that doesn't mean that they don't have deeply held beliefs and values that are based on you know a lifetime of experience of education of you know family values being passed along from parent to child you know these matter to you know faith is it's important it's one it's one of many things that shape people's beliefs but people have the right to decide for themselves and in washington we've given people that right when it comes to deciding about whether they're going to have a child or not over or under certain circumstances how they're going to die you say people who know what they want they know what their values are when you were with your partner and he was dying did you know what your values were did you know what you wanted and what he wanted i did i knew what he wanted we were we were very clear with one another we had made advance directive as we had talked about it he had had a family meeting with his family that was with a psycho psychologist present to act as sort of a facilitator so we took all the steps to protect his choices to communicate his choices and yet at the end you know his choices were not on earth we were not provided the information that he wanted that would have made his dying less less terrible had i said felt awful the silver lining of that is that made me an activist for changing the law and in two thousand and eight we passed the death with dignity act and i have to say of that  when c n n called the election for an issue of one thousand it was one of the best days of my life so and it felt like justice to me because so many people have had to die so badly and not had their wishes respected not have their choices honored and had to experience so much unnecessary suffering and even though a relatively small number of people use washington's death with dignity act about point two percent of the of the people who die in washington all of us all of us who think we might want that choice are comforted by knowing it's available so not that many people follow through and use the death with dignity act a lot of people start the process and then change their mind or they get a good pilot palliative or hospice care and they don't feel the need to take the medication but for that small group of people who are experiencing suffering that just can't be managed having the choice is very important well and as you said it's also about knowing someone like me i don't have any terminal am hoping i'm going to live for another forty years and yet and yet the thought of i'm not afraid to be dead i'm afraid of the dying process and the thought of being able to have some choices some power to say this is too much or i'm done the thought of not having to put my kids through those final phases if i am and i'm bearable pain you know i get migraines that sometimes feel unbearable they're mercifully brief but it's horrible for my children to have to know that that's happening and to watch me suffer like that and the last thing i would want as a mother is for them to have to watch me suffer and to death like that well that's just one of the many reasons why people make that choice the idea that you can decide how long you're going to go go on where you're going to die that's really important most people who use the death at home where they want to die and then second who they're going to die with you can invite the people that you want to be present with you at the time you die and this idea of knowing when you're going to die of of saying your goodbyes being forgiven forgive forgiven and being forgiven makes it so much easier for everybody who's present they can see that the person who's dying is dying in a very peaceful way and you know that there is no suffering involved with the during the dying process that i think helps provide closure for people makes it makes it easier for people to you know to go on and to grieve if somebody's listening to our show and they just either want to get involved in ensuring that these rights are broadly available or if they are actually starting to wonder about their own end of life process or the process for someone they love where should they turn who should  compassion and choices of washington both you know for basic advance planning and for information about the option of death with dignity if they're a person who's received a terminal diagnosis and it's important for people not to wait too long sometimes we get people calling us you know just days before their you know before they die and there's the death with dignity act process takes a couple of weeks a minimum of fifteen days and very few people can actually get through the process in fifteen days so it's important not to wait too long if you're someone who wants this option and you're already on hospice or you've already been diagnosed with a terminal illness about people who aren't terminal what about somebody the situation of progressive dementia or other things do they have any power do they have any options as well is there information available for them yes we have information on our website we have of developed a mental health advance directive a special kind of mental health advance directive for people dealing with dementia and alzheimer's to make their wishes for care and for financing their care and who provides their care and when to stop driving things like that to make that  know we have a document that talks about the choices that people with dementia and alzheimer's and other diseases that result in the loss of capacity to make decisions for yourself can can make but as it stands really do right now the only thing that people can do is to decline treatment food and water right if they're if they're still mentally competent but they've been diagnosed with with alzheimer's disease some people a very few people have decided to voluntarily stop eating and drinking and in order to not lose the ability to make choices for themselves so well and i know that there is more conversation across the country increasingly about this as the  number of people aging and and developing some kind of dementia and i read recently that almost a third of people are expecting and kind of this up and coming generation the boomer generation expected to die with some level of dementia so i know people are thinking association published an interesting report and the number of people with all simers if i've got that number right is supposed to increase by fifty eight percent in washington by the year two thousand and twenty five so many of us are going to be dealing with  family members who have to mention and all simers or family members are going to be dealing with exactly right and so as a person you can be proactive you can make a good advanced directive like the one available on compassionate choices of washington's website  free of charge you can make a directive like that that where you can indicate that you don't want to be treated for antibiotics if you get an infection like pneumonia or a urinary tract infection you can use what's called the physician orders for life sustaining treatment which is sort of a non hospital medical order that lets people decline things like c p r nutrition an artificial nutrition and hydration the use of antibiotics and so that is a medical order that you can use to decline treatment and that's that's very effective as well and again if you want to be very proactive and stay in charge voluntary stopping eating and drinking is an option and there are a lot of misconceptions about that people think it's oh it's starving to death it's but the truth is we're talking about somebody who's already dying right and when i think about that what i actually think about is the way that our our companion animals slow kind of prolonging a slow death in the same way that sometimes we get caught right it's actually natural for people to lose their appetite or lose interest in eating and drinking as they approach the end of life they begin to to eat and drink less and sleep more and eventually become comatose and die so what people are doing with voluntary stuff and eating and drinking is just making the dying process less prolonged they're just doing it a little sooner than they might have naturally ha disease sometimes it could be you know quite a quite a long time in advance and that's the one you know the one problem for you know people dealing with alzheimer's and dementia it's the if you want to maintain control you have to do it while you're still mentally competent thank goodness you're here thank goodness there is somebody who is gathering this information so that not so that somebody is getting pushed to go one way or another but simply so that people know what their options are have been doing this for fifteen years it's been the most rewarding career i've ever had i work with about seventy volunteers in different capacities member of the board of directors advisors medical advisors clients support volunteers and work one on one with you know with with dying patients and you know these people are really the salt of the earth you know they're out there making sure that people understand all their choices once they've made a choice ensuring that these choices get honored and then even being present at the time of death of a death with dignity to make sure that you know the patient or the person using the law follows the medical protocol and to provide comfort in emotional support to the in the fall of two thousand and fourteen a young woman brittany menard captured the attention of millions around the world when she announced that she was terminally ill and intended to die on her own terms on january first of two thousand and fourteen britney had received the kind of diagnosis that every that is everyone's worst nightmare the headaches that she'd been experiencing were caused by an aggressive form of brain cancer and she had six months to live when britney decided to go public with her decision today to die with dignity everybody stood up and paid attention most people who followed the final weeks of her life were appreciative of her courage some people were critical or pleaded with her not to go through with her intentions and some condemned her to hell pretty joined forces with compassion and choices an organization that