The Rights Of The Terminally Ill [Interview][Transcript]

Dawn_Ann_Farnin_Healthcare_Ethicist

Guest: Dawn Ann Farnin
Presenter: Neal Howard
Guest Bio: Dawn Ann Farnin is a Health Care Ethicist located in Orange County, CA. She earned a Master of Science degree in Health Care Ethics from Creighton University School of Medicine with a discipline in end of life care. She currently works in her community in an effort to introduce and implement Ethical standards of care related to transitional treatment of terminally ill patients.

Segment overview: Dawn Ann Farnin discusses the importance of knowing one’s rights as they relate to end of life decisions.



Transcription

Health Professional Radio

Neal Howard: Hello and welcome once again to Health Professional Radio. I’m your host Neal Howard, so glad that you could join us and we appreciate that quite a bit. When it comes to ethics, we automatically jump to politics or law enforcement but what about ethics in healthcare? I have a physician that I see on a regular basis and I think that she is an ethical and moral person but if I were to become terminally ill, would her morality change? Would her outlook on my health, my mental stability, my emotional stability – would that be important to her? I like to believe that it would be. Our guest in studio today is returning with us to talk with us about healthcare ethics. Her name is Dawn Ann Farnin and she is a Health Care Ethicist doing her work in Orange County California. Now she received a Master of Science degree in Health Care Ethics from Creighton University School of Medicine with a discipline in end of life care and she’s currently working in Orange County California in an effort to help introduce and to implement more ethical standards of care as those ethical standards relate to the transitional treatment of terminally ill patients. Welcome back Dawn Ann.

Dawn Ann Farnin: Thank you for having me back Neal.

N: Thank you. When we were here before, we were talking about your role as a Health Care Ethicist. I had never heard of a health care ethicist but I’ve come to find out through speaking with you that hospitals use them quite often if they don’t have someone on staff in house all the time. What exactly is a Health Care Ethicist for our listeners who aren’t familiar with a term or the profession?

D: Well a Health Care Ethicist deals with ethical conduct and in the world of healthcare and medicine they deal with the moral negotiation and facilitation of conversations between healthcare professionals and patients when it deals with moral or ethical dilemmas. They can’t be decided rather quickly and so they bring an outside expert in such as myself to sit down and facilitate the conversation between both parties and get both sides of the conversation and try to come to some resolution.

N: There are many disciplines within healthcare ethics, yours being focused on end of life care, advance directives and wills and what does a person who is headed toward death want done with their belongings or how do they want to be memorialized and things of that nature. When the shock of being told that you’re terminally ill takes hold, where do you come in if the healthcare provider is being less than understanding? Let’s say if you had to sum up, say the top five most important aspects of your job as a Health Care Ethicist – what would those be as far as your experience is concerned?

D: Well first and foremost, the one thing that I always tell people and whether they’re terminally ill or they’re completely healthy. I’m 55 so I’m of the baby boomer generation and a lot of my friends right now are losing their parents and are becoming caregivers for their parents. So they’re going through what I went through as a much earlier age and so I’m telling people, “If you want to have certain things and certain options and certain wishes and certain ways to be treated when you become terminally ill, document those now through an advance directive. And I studied advance directives up in Seattle for two years and so I work with actually the “Five Wishes Advance Directive” which is a nationally recognized advance directive through aging with Dignity Organization which was given a grant through Robert Wood Johnson Foundation and instead of having to go to an attorney you can actually fill out your own advance directive yourself. So people don’t have to pay thousands or hundreds of dollars to go to an attorney to have a living will. It used to be a living will but now the advance directive has taken place of the living will because what it has done it incorporates assigning a Health Care Proxy within the same document. So instead of going to an attorney and filling out a living will and then filling out or signing a healthcare proxy, the advance directive allows you to do both of those in one form.

N: Sort of a one stop shop as opposed to two separate specialists.

D: Correct. And it also addresses three other issues, it addresses pain management. So you have the option of choosing how you want to be sedated or not sedated or when, how often, even if it makes you drowsy or if it hastens your life not intentionally. We’re not talking about anything related to physicians assisted suicide or anything related to that but just unexpectedly hastens your life that you’re okay with all of that. You’re also able to write down how you want people to treat you mainly with dignity and respect by your bedside to talk to you as if you’re there as a patient and aware and understand what everybody is saying. And that the Fifth Wish is what you want your love ones to know and so you can ask for specific music to be played or specific people to be around on your bedside or you can write anything down. I mean me personally just for transparency’s sake I keep mine on my desktop, I’ve already have a healthcare proxy, I give on my clients a laminated card to keep behind their driver’s license that assigns their healthcare proxy so if they end up in the E.R. or trauma room they can call that person and that person’s aware of all of their wishes and has a copy of their advance directive and can give directions to the E.R. or trauma teams saying they don’t want CPR, they don’t want extraordinary measures or they do. So it’s important to have discussions with people right now what you want before you end up in a place where you’re incapacitated or you become terminally ill. This way you can get all that other way and you can spend the last weeks or months of your life, if you are terminally ill, with your loved ones enjoying a great quality of life.

N: And that’s why it’s so important that advance directives are important to the terminally ill as well as their family to kind of takes a lot of the stress and confusion. As you said you can spend your last moments with your family without all of the confusion, frustration or all of the misinformation or the back fighting and fighting that goes on when someone approaches the end of life.

D: Yes and this segment is too short to even talk about the stories that I went through that it’s just horrific, it tears families are apart. And the things I’ve seen and heard and been through myself, it has happened to my own family. You never know but if you don’t have those discussions early enough and everybody is not on the same page and you all have the same understanding of what everybody wants and you respect it. Really the goal is whether you agree with it or not, that you respect it, you don’t judge it. And that you make sure that you promise them that “We will follow your wishes. We will have your wishes followed. So whatever you want we will take care of and we will do.” So for me, I want to be planted in my best friend’s garden. And so that seems odd to a lot of people but that’s where I want to end up. So that what I put in my advance directive and that’s what gonna happen to me. So everybody is a little different and you can put whatever you want, that’s what great about it… If you want a memorial service or if you want this, I mean so you can write anything you want down on it. And also you can revoke it, so you can change it at anytime, you can fill out a new one but just do it now before you get sick. And so when you get sick and you just you change your mind and maybe you do want CPR or extraordinary measures, you can change your mind at any time. But if you put in writing now and you have discussion with your loved ones “This is what I want” and you assigned a health care proxy if for some reason you become unable to advocate for yourself, you have somebody that will follow and respect your wishes and advocate for you.

N: Now as we wrap up this segment, I’d like to talk for a few minutes about as you mentioned everyone’s different. You have different wishes than the person across the street as opposed to the person across the country or who is in another country or from another country. How often do you have to deal with the culture differences among our population? And how difficult is it to get healthcare professionals to hone in on an understanding of some of the existing cultural differences especially when they relate to this person entering the end of life phase?

D: Well that’s part of the transparency too, is that there are cultural differences. And I know that we had talked earlier about the top five things that I would put at the top of my list of what I feel or my duties as a Health Care Ethicist and part of that is really making sure that healthcare professionals or people understand that there are cultural differences between people. And that people have different culture rituals and there was Sectarian Act instated in 2011 where it’s stated that if you’re in a hospital and they won’t perform a procedure because of their religious affiliation or vice versa that you can leave that hospital immediately or request a transfer. So people need to understand that they have rights, that they have rights associated with their beliefs, their cultural background and their wishes.

N: Now as a Health Care Ethicist focused on end of life, often when a person approaches end of life those around them are thinking well quality of life. They’re not having a very good quality of life and their life is about to end. When you encounter an attitude that well this person is dying, a lot of the things that were important to them, they’re just not important anymore. “I’m going to do the things that I think should be done regardless of culture differences, opinions or world view.” How does your job help someone to facilitate a smooth transition even though some of the cultural traditions don’t jive with their personal world view?

D: Well that’s why I copyright it. I spend a couple of years and I wrote down pages of rights related to the five wishes. And each wish I wrote down a set of rights that people need to know that they have when it comes to making their own decision. So to give an example for pain management, they have the right to be sedated, they have the right to be groggy, they have the right to have medicine around the clock or they have the right to choose not to have sedation. So what I do is I give people scenarios, that they’re not aware of, like if somebody is to experience a traumatic brain injury, do they want to be off of the ventilator within three months? Do they want to go six months? I mean there’s different scenarios related to medical care and how you’re treated in a particular facility, depending upon how long you’re in that vegetative state. So people need to understand that if they don’t know their rights that they can’t advocate for themselves. So there’s also accountability on the patient’s side to really know what their rights are and understand what their role is and being their own consumer and advocate in order to be able to let their health care treatment team know what they want in addition to giving them a copy of their advance directive.

N: Great. You’ve been listening to Health Professional Radio, I’m you’re host Neal Howard. It’s been a pleasure talking with Dawn Ann Farnin in studio today returning to talk with us about Health Care Ethics focused on transitional treatment of terminally ill patients. We’ve been here talking about advance directives. We’ve been talking about some of the cultural differences that play a part as a person nears their end of life and we’ve been also talking about some of the differences in world view that come into play and how some of those differences can be smoothen over so that a person doesn’t have to leave a hospital simply because a doctor or a surgeon or a nurse or someone feels a little bit edgy about this person’s culture or maybe their strange wishes for what should be done after their death. It’s been great talking with you Dawn Ann.

D: Thank you Neal, great talking to you too.

N: Thank you so much. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm. And you can subscribe to our podcast on iTunes.

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