New Book by Viki – Resource Workbook, Visual Tools and Conversation Guide


I am excited to let you know about a new book I have just finished which has uniquely designed visual tools to help with difficult conversations, lots of articles you can share with others, and a step-by-step conversation guide to help with issues such as denial, guilt and evaluating danger. – To order use the contact page or email Viki at kindethics@gmail.com

photo   New — Resource Workbook, Conversation Guide and Visual Toolkit
100 pages (8½ x 11) Full sized, photocopiable worksheets
Usually $40 – Book launch SPECIAL: $32.95 plus sales tax and shipping
(You can order it by emailing me at kindethics@gmail.com)

Here are a few of the resources included the workbook:

    Section 1: Medical Decision Making Tools

Crisis Planning Article and Worksheet
Drawing an Option Roadmap Article and Diagram
Weighing the Options – Risks, Benefits and Burdens Exercise
Evaluating Treatment Options Article and Algorithm
Two-Hand Test for Making Medical Decisions Diagram
5-Step Process to Help the Person Get Out of Denial

    Section 2: Evaluating Danger and Risk Tools

Protecting vs. Respecting – Managing the Danger Article
Evaluating Risk for Those Without Capacity Diagram
Evaluating the Dangers Worksheet

    Section 3: Caregiver Conversation and Support Tools

The Ladder Diagram – The Caregiver’s Needs Count Too!
How is Your Relationship Now That Illness Has Come Into Your Lives?
Viki Kind’s 4-Step Process for Asking For and Accepting Help
How to Say “No” Handout

    Section 4: End-of-Life Conversation Tools

Quality of Life Statement Template
Guidance for My Decision(s) Maker Worksheet
What I Want My Doctor to Know About My Faith and/or Culture
Two CPR vs. DNR Articles

Viki’s New DVD available – Why the healthcare directive you wrote might not work in the hospital


End-of-Life Conversation Kit
A Bioethical Perspective and Toolkit

    Includes: 80-Minute DVD, the Go Wish Cards, and my Award Winning Book

Holiday Special for entire kit: $55 plus sales tax/shipping (Usually $70)
Items can be ordered separately. Email/call to order: kindethics@gmail.com or 805-807-4474

    1. 80-minute DVD presentation and 13 articles and worksheets:
    “Why the Healthcare Directive You Wrote Might Not Work In the Hospital”
    A Bioethical Perspective and Toolkit to Protect Patients

    A practical, in-depth presentation for you and those you work with:
    •Specific ways healthcare directives fail in the healthcare setting.
    •How to create a document that will be personal, meaningful and will work in the hospital setting.
    •Discussion of CPR, feeding tubes and other life saving medical treatments from a medical point of view.
    •Conversation tools to facilitate these difficult end-of-life discussions.
    •Insights regarding the unexpected financial costs at the end of life.
    •An algorithm to help your client’s decision maker make better medical decisions when the time comes.
    •How to increase the chance that the doctor will honor the directive.

    DVD also includes the following documents:
    •A Template to Use to Create a Qua
    lity-of-Life Statement
    •Viki’s Quality-of-Life Statement
    •Guidance for My Decision Maker(s) Worksheet
    •A List of Questions to Ask When Making Medical Decisions
    •Crisis Planning Worksheet for Urgent Decision Making
    •An Algorithm for Evaluating Treatment Options When You Know the Patient’s Long Term Goals
    •Three Easy to Understand CPR Articles
    •What Do I Want The Doctors To Know About Honoring My Faith and Culture Worksheet
    •Steps to Follow When Having My Doctor Review My Advance Directive Worksheet.
    •Insider’s Guide to Filling Out Your Advance Directive
    •Quick Tips $45 if purchased individually.

    2. Go Wish Cards: An easy way to talk about your client’s end-of-life wishes by sorting the cards into piles: What do you want? What don’t you want? Do you want to be free from pain? Do you want your family with you? Do you want to meet with clergy?

    $10 if purchased individually.

    3. The Caregiver’s Path to Compassionate Decsion Making: Making Choices For Those Who Can’t. The unique, award-winning book on how to make the life, health and end-of-life decisions for those who have lost capacity. Ethically based, it alleviates a lot of caregiver angst.

    $15 if purchased individually.

    About Viki Kind:
    Viki Kind is a clinical bioethicist, medical educator and hospice volunteer. Her award winning book, “The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can’t,” guides families and professionals through the difficult process of making decisions for those who have lost capacity. She has lectured across the United States teaching healthcare professionals to have integrity, compassion and to improve end-of-life care through better communication. Patients, families and healthcare professionals rely on Viki’s practical approach to dealing with challenging healthcare dilemmas. Viki provides bioethics consultation and support for many hospitals in the Los Angeles area. She holds a master’s degree in bioethics from the Medical College of Wisconsin. Viki is an honorary board member of the Well Spouse Association. She has also been a caregiver for many years for five members of her family.
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    Have a kind and respectful day.

    How to Say No – Handout

    November 25, 2013 by  
    Filed under For Patients & Families


    How to Say “No” Handout – author unknown but very much appreciated.

    When you need additional time to think about your own needs:
    1. I don’t have an answer on that so I’ll have to get back to you.
    2. I’m not sure what I’m in the mood for. Let me check in with myself for a moment.
    3. Let me check my calendar and get back to you.
    4. I’ll have to see about that. How about I give you a call in a week of so?
    5. I may have something else planned that day. I’ll let you know.
    6. I feel overwhelmed this month. Can we talk about it again in a few weeks?
    7. Let me do some thinking about it first. When do you need an answer?
    8. That merits serious consideration. I’ll make a few calls and let you know.
    9. That sounds good, but I’ll have to see what ___________ has planned for us first.
    10. You’ll have my answer by five o’clock tomorrow.

    When its time to say “No”:
    1. I’m just not available next week.
    2. I think I’ll have to take a rain check on that.
    3. I won’t be in town. Can I help you come up with some alternatives?
    4. I’ve decided I need a rest from that sort of thing, but thank you for asking.
    5. I’m afraid I just can’t afford to right now.
    6. I promised my family to spend more time with them. I am sure you understand.
    7. Have you asked ___________ or ___________? Either one seem perfect for that job.
    8. I’m flattered you asked for my help, but I am a bit overcommitted right now.
    9. It’s been a rough week and I’m just not feeling up to it.
    10. I’m taking myself on vacation. I’m sure you’ll find good volunteers for that.
    11. Tomorrow? Oh, that’s short notice. I’m afraid I can’t make it.

    Keep in mind that:
    1. No excuses are necessary.
    2. No apology is necessary.
    3. It is quite possible to say, “No,” while being both courteous and polite.
    4. Saying it like you mean it tends to prevent the other person from trying to talk you into it.

    Clarifying How to Use the Structure of my new Quality-of-Life Statement to Make it Your Own


    The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document at http://kindethics.com/2012/01/my-new-quality-of-life-statement-to-attach-to-my-advance-directive/ if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.

    Sections of QOL Statement to Consider Including in Your Directive:
    ? Types of illnesses where this advance directive would apply.
    ? What is important to me?
    ? What conditions would I find reprehensible to live with long term?
    ? CPR, ventilator and feeding tube preferences.
    ? Reassurances for the decision maker.
    ? What is a good death in my opinion?
    ? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?

    If you have questions, feel free to contact me at kindethics@gmail.com. If you would like to share your new document with me, I would love to see it so I can see how the structure is working.

    Have a kind and respectful day.

    Crisis Planning Worksheet to Support Caregivers Who Have to Make Urgent Decisions

    February 11, 2013 by  
    Filed under For Patients & Families, Newsletter


    If you would like this in a Word Doc, email me at kindethics@gmail.com

    Caregiver Crisis Planning Worksheet

    Ideally, before the next crisis, you should read this worksheet from the front to the back. Then you should fill in your personal information and strategies for handling the next caregiver crisis. If you are in a crisis right now, you should go to the last few pages immediately and read the rest later, but as soon as possible.

    This worksheet is divided into three sections:
    1. An overview of things that go wrong in how we cope during a crisis.
    2. An overview of how we can improve how we cope and prepare for a crisis.
    3. A worksheet to plan how you are going to handle the next crisis.

    Evaluating your crisis management style
    Everyone who has been in a crisis has looked back and said, “I wish I had said or done something differently.” This is an opportunity for you to think about how you have managed a crisis in the past and to discover what you did well and what you need to improve. Then you can be better prepared and more confident when the next caregiver crisis occurs.

    Let me tell you about Monica – a true story. Monica had been home from work for a few hours and was enjoying her third glass of wine. The phone rang and it was the hospital calling to tell her that her father had fallen, had hit his head, and was unconscious. (Sounds like a typical caregiver day – right?) She jumped in the car, forgetting to grab her purse, and drove to the hospital. About a mile from the hospital, she sees a police car behind her signaling for her to pull over. The police officer begins by asking for her license, which she forgot to bring with her. Next, the officer smells alcohol on her breath and proceeds to have her take a breathalyzer test, which she fails. She is arrested for drunk driving. Of course, Monica doesn’t make it to the hospital to be there for her dad.

    I don’t need to tell you what she did wrong. It is obvious. She now knows that she should have been more prepared. She could have had a crisis plan that could have slowed her down for just a few minutes so she could have thought more clearly and made better decisions.

    How are you in a crisis?
    Think about a time when you handled a difficult situation really well. What did you do that made it easier, better, more manageable, etc?
    ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

    Now think about a time when you panicked, mishandled a situation, or when you didn’t make the right decision. What got in the way of you thinking clearly enough to cope with what was happening?
    ________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

    Don’t worry that you struggle. We all do. We are all incredibly human. This is why I want you to create a plan that can help you get calm, to ask for help, and then think more clearly.

    Getting calm
    Everyone is different when it comes to what will help them calm down. For me, it is picking up the phone and calling a friend. For my brother, it is taking a walk and getting some air. For others, it might be taking a couple of deep breaths, having a quick cry, praying, counting to ten, or doing research on the Internet. You will need to think about what has worked for you in the past that has helped you get your emotions under control. Go to page 5 and write down what will help you stay calm.

    Why getting calm matters
    The problem with decision making in a crisis is that our emotions have taken over our brains and this leaves little space for us to think rationally. The initial surge of emotion and adrenalin lasts approximately 90 seconds. Then, every time we think additional panicky or scary thoughts, we fire off 90 more seconds of emotional chaos. The goal of slowing down for a few minutes is to give your emotional brain a chance to calm down which will then allow your rational brain time to get activated.

    (This is why Monica shouldn’t have rushed out the door. If she had sat still for a few minutes, she could have thought about getting someone to drive her to hospital. If she had calmed down even a little bit, she might have remembered her purse or called for someone to come and help her.)

    You have more strength than you realize

    You have more control and strength in a crisis than you realize. You can take control of your brain if you don’t keep telling yourself things that get you more upset. Instead of telling yourself, “Oh my goodness…I am so afraid…I can’t believe this is happening…Oh no this is the worst thing that could happen, etcetera.” Tell yourself, “I don’t have time to be upset right now…I have to focus on figuring out what is the right thing to do.” Tell yourself that you can cry, scream, or be afraid later on, but right now, you have to think. Say to yourself, “I am calm and focused. I can listen and understand what is happening and make a good decision.”


    Here are ideas for what you might need to do before you run out the door:

    • Ask someone to watch my kids.
    • Arrange for someone to stay with the other person I am caring for.
    • Tell my boss I have to leave.
    • Have someone come over to drive me since I am still hysterical.
    • Pack a bag because I may need to stay over night at the hospital. (I had a bag that I kept in my trunk filled with what I would need when I had to meet one of my relatives in the emergency room. I made sure I had a sweatshirt, bottled water, snacks, change for the vending machine, a book to read, and a change of clothing.)
    • Pack my phone and/or computer charger. (I wish I had remembered this when I went to visit my mom in the hospital and ended up staying there for four days straight.)
    • Pack my list of phone numbers.
    • Grab this crisis action worksheet.
    • Bring a list of person’s medications and medical history.
    • Bring my own personal medications that I will need later on today.
    • Pack a book to read or something to do while I am waiting.
    • _______________________
    • _______________________

    Trust me. You will be so glad that you stopped and went through this list before you rushed out the door. Not only will you be more prepared, but by reviewing this worksheet, it will help your brain calm down. Before you read the next section, go to page 5 and fill in what you need to pack. Make sure you think about what you might need and what your loved one might need, etc. I am sure you will keep adding things to this list.

    If you have to make an important decision in a hurry:
    Ask how much time you really have. Oftentimes, the doctor says you need to decide right now, but really you could have a few minutes, a few hours, or even a day. Sometimes the doctor will want you to rush because it convenient for his/her schedule to take care of the crisis right now or the doctor may be worried about his/her legal liability if you wait too long. Ask the doctor how long you really have to make this decision.

    Even if you only have a few minutes before you need to make the decision, take a couple of deep breaths or take a quick walk outside. Do whatever you need to so you can get past the initial 90 second surge of emotions that is getting in the way of thinking clearly.

    What do you need to find out so you make the decision?

    1. Find out the facts. I would encourage you to ask another person to help you listen and to have someone write down what is being discussed or record it. When in a crisis, your mind is not working as well as it usually does, so it helps to have someone there to be a second or third set of ears. If you don’t have anyone there with you in person, do a conference call with a friend or family member who can listen and ask questions. If you don’t know how to do this, ask someone there to help you or to use their phone.

    2. Ask the healthcare professional to talk about the all the possible options/solutions that are available. There is rarely just one option or choice. You will feel better later on if you feel like you had a real choice in the situation.

    3. Ask about how each of these solutions would play out over time. Too often, people forget to ask what will happen in the long-term. Yes, right now is really important, but make sure you ask about how your decision will play out in the future. How will the patient’s quality of life be changed by this decision?

    4. Ask about the risks of choosing the solution the person has recommended. One of the biggest dangers in picking a solution too quickly is that we don’t ask about the downside or possible negative outcomes. We are so anxious to have things work out okay, that we forget that there is no perfect solution or solution without risks.

    5. If you are a person who needs to write things down, then do so. If you are a person who needs to talk things out, then talk. Use whatever strengths you have when you usually problem solving. For me, I have to do some research on the Internet and then talk to someone I trust. After that, I can make my own decision. Stop for a minute and think about what you usually do when you have made good decisions in the past.

    6. Make the decision. I know you wish you had more time. I know you wish you had more information. And I know you wish you knew for sure that this is the right thing to do. We can never know for sure. All we can do is the best we can based on what we know at the time and what kind of pressures are on us in that moment.

    7. Now that the crisis is over, see if you need to modify or improve the plan. You can’t go back in time and change what has already happened, but you can see if you need to put an even better plan in place. This is life. We can only go forward from where we are.

    8. Get some support for you. Now that the crisis is over, you need to get some comfort and support. Reach out to the people who make you feel better or stop and do the things that make you feel better. Caregiving is never about just one crisis. It is a long journey with many crises and decisions. This is why you need to begin building a support system around you so you can survive the long caregiver’s path.
    It is time for you to create your own action plan.

    Make copies of all of this paperwork and put copies in your car with your caregiver bag, in your briefcase, a drawer at work, in your purse, near your front door with the bag you have packed, and/or in the drawer where the person you care for lives. You can also email yourself a copy or to friends/relatives who could fax it to you at the hospital. You will also want to add a copy of the person’s Advance Directive for Healthcare, Living Will, Durable Power of Attorney, and other documents you will need.

    This crisis action plan worksheet will only work if you have it with you.

    My Crisis Action Plan

    Here is what works for me when I need to calm down my emotional reactions:
    ________________________________________________________________________________________________________________________________________________________________________________________________________________________

    What will I need to do or to pack before I run out the door?
    ________________________________________________________________________________________________________________________________________________________________________________________________________________________
    ________________________________________________________________________________________________________________________________________________________________________________________________________________________

    Who will I need to call and what are their numbers?

    Doctor, paramedics, hospital or nurse helpline, insurance company, family, friends, hospice nurse, palliative care team, suicide hotline, etc. Once you have gotten to the emergency room and the person is being cared for, your first job is to call the insurance company and let them know what is happening so you don’t end up owing more money than you should.
    1.
    2.
    3.
    4.
    5.
    6.
    7.

    Who could come over and be with me right away?

    Who can give me emotional support on the phone?

    Who do I need to call to let them know what is happening?

    Who can I call to help me figure out what is the right thing to do?

    Who can I call to help me do some research on the internet?

    While I am waiting for the ambulance, the doctor, or for help; I can decide what questions I will need to ask and what I will need to tell the professionals about what has happened?

    What is important for me to tell them about my loved one’s condition and healthcare preferences?

    Information to have ready (Use the back of this sheet for your notes)

    1. Attach copies of the person’s advance healthcare directive, living will, durable power of attorney for healthcare, POLST/MOST/MOLST/POST form, and/or other legal documents.
    2. Bring “List of Questions to Ask When Making the Medical Decisions”
    Download from Viki’s resource page on her website: www.TheCaregiversPath.com.
    3. Attach information about the person’s medical history
    Ask the primary care doctor for a copy of the person’s history and physical. Staple this information to this worksheet.
    4. Bring “List of Medications,” including any vitamins and herbs. Bring the actual bottles with you.
    You will need to update this each time there are changes in the medications. Staple this information to this worksheet

    10 Quick Tips for Crisis Decision Making

    Do something to help yourself calm down. Breathe.
    1. Ask how long you really have to make the decision.
    2. Get the facts. Have someone do some research for you if you aren’t near a computer.
    3. Ask about other options.
    4. Ask what would happen if you chose these other options.
    5. Ask about the positive and negative consequences of each of the possible choices.
    6. Ask about the short-term and long-term consequences of each choice.
    7. Have someone else help you listen to what is being said and to take notes and/or record it.
    If nobody can be there with you, have the person call in and listen to the conversation over
    the phone.
    8. Make the decision realizing that you are doing the best you can in this crisis situation.
    9. After the crisis is over, think about whether you will need to modify or improve the plan.
    10. Now that the crisis is over, get yourself some support. You just went through a lot.

    Have a kind and respectful day.

    Getting Caregivers to Ask for Help – Viki’s Four-Step Process


    Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. Leo Buscaglia

    I have never been very good at asking for help and like many family caregivers, I didn’t think that my own needs mattered. Thinking I had to do everything all the time caused me to have two breakdowns; once during my early years of caregiving and again the last year of my caregiving journey. (I was a caregiver for over 17 years.)

    I wish I had known about the following statistics from the MetLife Study:

    Family caregivers experiencing extreme stress have been shown to age prematurely and this level of stress can take as much as 10 years off a family caregiver’s life.

    40% to 70% of family caregivers have clinically significant symptoms of depression with approximately 25%-50% of these caregivers meeting the diagnostic criteria for major depression.

    Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves.

    I don’t know which statistic frightens me the most. But I do know that I have paid an emotional, physical and financial cost for being a caregiver. (I also loved taking care of my family.)

    But it didn’t have to be that way. I could have and should have asked for help. But I am a caregiver and when people told me, “Just make time for yourself,” it wasn’t that easy.

    If you think about who in a family becomes the caregiver, it will usually be the person who is more nurturing and generous with their time. So by nature, the caregiver is the type of person who already gives more than others. And this becomes a vicious cycle of give – give – give instead of give – receive – give – receive.

    I recently said to my friend who is an overwhelmed caregiver, “Maybe now is a good time for the rest of your family to learn what they need to do to help their grandfather.” What I heard back from her were lots of excuses:

    They don’t want to help
    They don’t know what to do
    They don’t know him like I do
    They will just make it worse
    I don’t have time to teach them
    It is just easier if I do it
    I get tired of asking
    I don’t think they would help, even if I asked
    Why should I have to ask, they should just know what to do
    I don’t want to be a bother
    It is too much effort to ask

    Sound familiar? I realized in that moment that it isn’t always that the family won’t help; it is the caregiver who is resisting asking for help. So let me ask you. If you had a broken shoulder, would it be okay to ask someone to carry your groceries to the car? If your car broke down, could you call for a tow truck? When your loved one needs help, don’t you get them the help you need? Then why don’t you deserve the same attention? Your needs matter and you deserve to have someone help you.

    Viki’s Four-Step Process

    Step 1:
    I encourage you to explore what is keeping you from asking. Write down what goes through your head when someone says, “You should just ask for help.” What are your resistance statements?

    Step 2:
    Take your list of resistance statements and put a statement beside it to help you get past what has been preventing you from asking for help. Here are a few examples caregivers have come up with:

    They don’t want to help – Well I don’t know this because I haven’t given them a chance
    They don’t know what to do – I could teach them
    I don’t have time to teach them – You don’t have time because nobody is helping you. If you teach them now, then they can help at other times in the future.
    It is just easier if I do it– Only the first time.
    Why should I have to ask, they should just know what to do – Would I have known what to do before I became a caregiver? Then how would they know?

    I am not saying you will be able to get past your barriers right away, but you need to begin so you won’t break down like I did. One thing that helped me was to realize that the other person won’t do what needs to be done as well as I would. They may do things slower, awkwardly at first, and in their own way. But that is okay because you are going to get free time and your loved one will be okay.

    Step 3:

    Make a list of all the things that would help you such as practical, emotional, financial and information support. Write a really long list and carry it with you so when people say, “What can I do to help?” you can pull out the list, hand it to them, and ask them what they would like to do.

    Ask for specific things:

    Can you call mom each week and ask her about her favorite memories or talk to her about what is worrying her?
    Can you call me every day to check on me? (This can be very helpful to keep your depression under control.)
    I don’t have time to read this book about Maria’s disease. Can you read it and then send me the main points?
    Can you research what is the best wheelchair to buy?

    People can help from a distance:
    Can your brother listen to Dad’s doctor’s appointment by speaker phone?
    Can they do the shopping for groceries online and have the food delivered?
    Could they pay for someone to come to the house to give you a massage?
    Can they take over paying the bills or set up automatic bill pay for you?
    Can they send $51 a month so you can pay for three hours of respite care?
    Ask someone to create a phone tree to disseminate information. This way you don’t need to make all the calls. Have others spread the news.

    Local help:
    Mom needs a ride on Thursday for her haircut.
    Could you pick up some milk and eggs when you go to the store today?
    I need someone to come and clean my kitchen.
    Can you sit with Bob on Thursday night so I can go to a class about coping with dementia?

    These are just a few ideas. I am sure you can come up with lots of ideas, big and small. (Don’t hesitate to put everything on the list. You will be surprised by what people are willing to do.)

    Step 4:
    Ask a lot of people. You may need to ask 5 people to find one that will help you but that is okay because now you have one person who will help you. Ask people for things they can actually do. Different people have different abilities. Show them the list and let them choose what they would be comfortable doing. Tell them the deadline for when the task needs to get done.

    Oh no, I hear your resistance statement coming through. “There is nobody I can ask.” Here is my response to break through your resistance. There are more people in your circle of friends, family and community than you think. Call a local faith community and ask for help. (You don’t even need to belong to that church or synagogue.) Call the Area Agency on Aging in your town and tell them what you need. They can help connect you to resources. Tell the people in the hair salon about the struggles you are facing and maybe they know someone who can help. Many high schools are requiring kids to do community service hours. Call the school and ask to have someone assigned to help you.

    It may feel like a lot of work to begin to ask, but don’t let this stop you. This is another of those resistance issues. Remember that you are not just asking for this one time, you are training this person for the future. If you can get them to trained and used to helping, they might be able to help you every week or two.

    Lastly, give gratitude even when you think your family should feel obligated to help. Of course they should but let’s be realistic. Our practical goal is to get them to help more than they have been. Saying thank you and giving words of appreciation go a long way to reinforce good behavior. And if that doesn’t work, you can always say, “If you don’t have time to help, then you are going to have to pay to hire someone to help me.” That will get their attention.

    Have a kind and respectful day.

    My New Quality-of-Life Statement to Attach to My Advance Directive


    The goal of writing a quality-of-life statement is to have it express your personal preferences and to have it sound like you. One of the problems with many of the legal/medical forms is that they all sound alike and they don’t allow your voice to be heard. I encourage you to use the categories I have listed below to express what you would want people to know about you if you were too sick to speak for yourself. You can use some of my language from my document below if you would like but my goal is for you to make it personal and meaningful to you. You will know you have gotten it right if people say to you, “Yes, this is sounds like what he/she would say.” By making it feel personal, you will help your family/friends feel more confident that they are truly honoring your wishes.

    Sections of QOL Statement to Consider Including in Your Directive:
    ? Types of illnesses where this advance directive would apply.
    ? What is important to me?
    ? What conditions would I find reprehensible to live with long term?
    ? CPR, ventilator and feeding tube preferences.
    ? Reassurances for the decision maker.
    ? What is a good death in my opinion?
    ? What I want the doctors know about honoring my religious/cultural beliefs both while I am sick and/or dying?

    Here is my new quality-of-life or meaningful recovery statement. My wishes haven’t changed but how I am saying it is much more complete. Feel free to take any part of it you would like. Use the basic headings and then make it personal and meaningful for you. I would recommend attaching it as an addendum to a basic advance directive form that works in your state.

    Advance Healthcare Directive for Viki Kind – dated 11/1/2012

    Types of illnesses where this advance directive would apply whether I am terminal or not terminal.

    I can never list every type of disease that might make me begin to lose my mental capacity but the list might include, but not be limited to: all types of dementias, stroke, brain injury, mental illness, anoxic event, etc. I don’t have to be completely out of it like being in a coma, persistent vegetative state, or minimally conscious state for this document to go into affect. And I don’t have to be terminal. The point is that I don’t want to have my life prolonged/sustained if my brain no longer works well enough to enjoy what is important to me.

    What is important to me? (The loss of any of these might be enough for my decision maker to implement my wishes documented in this advance directive.)

    To make a difference in the world.

    To be able to communicate with those I love.

    To receive the joy that comes from personal relationships.

    To have some independence.

    To be able to give love, not just receive people’s kindness.

    To not be a burden on my family/friends – financially, emotionally or physically.

    To have a good death as defined by me (see below).

    What conditions would I find reprehensible to live with long term? (Please give me the chance to recover if recovery is possible, but if I am not recovering to a level of functioning that I would think is worthwhile, whether terminal or not, then choose comfort care and hospice which I understand will lead to my death.)

    All of the following conditions do not have to be present at the same time for the decision to be made to allow me to die from my illness/injury. Any one of these conditions may be sufficient enough to change my course of treatment from prolonging my life to comfort care and allowing a natural death.

    This list of “Conditions I would not want to live with” includes but is not limited to:

    Not recognizing my loved ones.

    Not being able to communicate by voice, computer or sign language.

    Wandering around aimlessly.

    Suffering that isn’t necessarily pain related.

    Significant pain that can not be controlled.

    Significant pain that requires so much medicine that I am sleeping all the time.

    Having to live in a skilled nursing facility or sub-acute facility permanently with my cognitive impairment. Nursing homes create such sadness in me every time have I visited or have stayed overnight with a loved one. I am too empathetic and take in people’s suffering too easily to be in that environment. It would destroy me long term. A short-term stay in a SNF/rehab/sub-acute is okay if I can recover to a life that I would consider worth living. (I understand that with certain types of traumatic brain injuries, they take a longer period of time to evaluate whether or not recovery is possible.) But if it looks like I am not recovering, then no thank you.

    Okay, now the CPR, ventilator and feeding tube conversation.

    My overall guideline is that if CPR, ventilator support or a feeding tube/TPN can return me to what I would consider to be a meaningful existence, (what is important to me), then please give me CPR, ventilator support and/or a feeding tube/TPN. But there has to be value in these medical options and any other medical treatment choices that are being considered. Don’t do things, including but not limited to, antibiotics, etc., that are just to sustain my poor condition.

    I am not opposed to living with a feeding tube/TPN if it gives me many years of being able to enjoy what is important to me. But if the feeding tube/TPN is just to sustain my miserable condition, (what I would consider reprehensible) then don’t put it in or give me feedings through it; and please take the feeding tube out if it is already in. (Okay, if I am on hospice and the feeding tube gives you access for administering the pain and suffering meds I need, then you can leave it in. But don’t put food or additional liquids in it.) The feeding tube, like all medical decisions, needs to create value in my life, not just sustain my life.

    If I am still healthy and can still experience lots of the things that are important to me, then give me CPR. But as my health declines and CPR becomes less statistically successful, then make me a DNR. Just like many doctors, I don’t want to die by CPR. I want to die peacefully without life-prolonging medical interventions. (Doctor, please ask yourself the surprise question: Would I be surprised if Viki died during this hospitalization or died in the next 6 months? If the answer is “No, I wouldn’t be surprised,” then talk to my decision maker about end-of-life choices, including putting me on hospice.)

    Reassurances for the decision maker

    You are allowed to make the best decisions you can based on the circumstances and what you know at the time. You do not need to know for certain or absolutely that you have all the answers. The decision doesn’t have to be perfect. Use your heart and your head. I trust you to do the best you can. (Ed, you don’t have to go into super-perfectionist mode.)

    I believe love does not obligate a person to sacrifice themselves to be the caregiver for another. The damage done to the caregiver, emotionally, physically and mentally is too costly. I do not expect someone to give up their mental, emotional and physical health for me. Look at the MetLife studies. Caregiving sucks. And I love my decision maker and alternates too much to impose such a burden on them.

    (Ed, if you need some time to make peace with what has happened, then you can take the time you need. I don’t want the decision to feel rushed or uninformed, which would cause you a lifetime of regret.)

    For you doctor, your role is to give my decision maker as much information as you can so he/she can make an informed decision. I encourage you to share your wisdom, guidance and experience but ultimately, it is my decision as expressed through my decision maker and this document. Remember, this document is an act of autonomy and should not be ignored by my decision maker/s, other family members, doctors or worst case, the courts. (I will definitely come back and haunt a judge who isn’t respecting my wishes.)

    What is a good death in my opinion?

    I would prefer to die at home but I realize that sometimes, a person needs to die somewhere else so I accept that. I would like to have my family/friends with me which includes and is limited to those I interact with on a regular basis. Those family/friends who have chosen to not be in my life while I was living should certainly not be there as I am dying. Because I like control over my life, I would like to be able to clean up my desk and to get my financial information updated. I would like to be able to write love letters, record messages and to say my goodbyes. (I will do my Go Wish Cards and leave a copy for my family.)

    I would like to die with reasonable pain control. For the days leading up to the death, I would be willing to tolerate a certain amount of pain if that allowed me to have meaningful time with family/friends. But at the end, there had better be no pain and definitely, no air hunger. (That doesn’t mean ventilator support; it means manage my air hunger with medications.)

    And you better not be force feeding me by mouth, by IV or by tube as that would increase my suffering. (And that includes you at the skilled nursing facility, sub-acute facility or other care community if I happen to be dying there. I know you have your regulations but I also know you can’t assault someone with food if they have said no when they had capacity.)

    That’s it for now.

    Viki Kind ________________________________

    Date: 11/1/12

    When there is no good answer – Turning a difficult decision into a better quality of life

    January 19, 2011 by  
    Filed under For Patients & Families


    Every day, caregivers are faced with painful choices. The other day, a man shared with me that he had promised his mom that he would never put her in a nursing home. But now she needed more care than he could provide. Just this week, she had started a fire in the kitchen. He didn’t want to break his promise but he couldn’t protect her from herself.

    This type of situation can be so painful. We want to do the right thing, but sometimes it becomes impossible. I explained to him that even though he had made a promise, he couldn’t stand by and let his mom be in harm’s way. He hadn’t known what the future would hold when he made that promise. I explained to him that as caregivers, we have a responsibility to step in and to make sure the person is safe.

    I encouraged him to do what he could to keep her at home. Perhaps he could hire more help or make the house safer. But if those options didn’t work, he had to forgive himself and do the right thing to find a good care facility. This doesn’t mean he won’t feel badly about going back on his word. This is the hard road of caregiving.

    Choosing the Least Worst Option

    What often helps caregivers making the tough decisions is to realize that sometimes we have to pick the “least worst option.” What does this mean? It means we don’t always get a “good answer” or a “good choice” when making a decision. The only choice may be to pick the least terrible option, because that is the best option available.

    Of course, caregivers should work hard to determine if there are any better options available, asking other people for help as they research their choices. But if the only option is one that is less than optimal, we will need to make peace with the situation by doing our best to make a bad situation a little better.

    Creating a Better Quality of Life

    When the “best” choice isn’t available, we can still make the decision better. As you evaluate the options, think about how your decision will be experienced by the person in your care. What will it feel like to move to a new place? What will it be like to go through a medical test or procedure? How will the decision be perceived through the mind of someone with Alzheimer’s or dementia?

    For the gentleman who now needs to place his mom in a memory care unit, he will need to look at the places that are available, to consider what his mom can afford and to make sure the place will meet his mom’s needs. He will also have to look at how he can make the transition easier on his mom. What can he do to make her feel safer when she moves there? How can he bring joy and comfort to her when he visits? What can he do to improve the quality of her life, even though this is not the kind of life she would have wanted? Even though his mom would never have wanted to move out of her home, her son can make each day a little better for her. This is called person-centered care—when we think about how our choices will be experienced by the individual in our care.

    Have a kind and respectful day.

    Free – Thinking Ahead Workbook and Videos available for those with Developmental Disabilities and other Cognitive Impairments


    emergency_room_3

    Good news. The California Coalition for Compassionate Care has created a workbook and set of videos for documenting the wishes of those with developmental delays. (It would also work well for those with other cognitive impairments.) You can get free copies of the workbook sent to you or you can download it directly. It is called “Thinking Ahead.”

    Here is the website: http://www.coalitionccc.org/thinking-ahead.php

    Thinking Ahead: My Life at the End – Enables people with developmental disabilities to advocate for themselves and stay in control of their lives through the very end.

    Thinking Ahead: My Life at the End contains words, symbols and pictures that facilitate discussion with and decision-making by persons with developmental disabilities regarding their values, goals and treatment preferences at the end of life. The DVD serves as an instruction manual, containing vignettes that illustrate in simple, graphic format the purpose and use of the materials.

    Thinking Ahead was made possible through a Wellness grant awarded to Alta California Regional Center by the California Department of Developmental Services and reflects a collaboration among Alta California, Golden Gate and Eastern Los Angeles Regional Centers, Board Resource Center and the Coalition for Compassionate Care of California.

    * Thinking Ahead English
    * Thinking Ahead Spanish
    * Thinking Ahead Chinese

    To order a free hard-copy of the Thinking Ahead workbook and DVD, send an email to
    info@finalchoices.org.

    Additional Resources

    Providing Hospice Care to Residents of Intermediate Care Facilities for the Developmentally Disabled – A guide to facilitate access to hospice services by persons who live in intermediate care facilities for the developmentally disabled.

    Have a kind and respectful day.

    When you are going the wrong way, turn around.

    August 2, 2010 by  
    Filed under Featured, For Patients & Families


    u-turn

    When we are making the decisions for those in our care, it is important to make sure that the decision is still working. You may find that you made the best medical decision you could and then the plan didn’t work. When this happens, it is important to reconsider the treatment plan. Otherwise, you’re driving down the wrong road: You can keep driving and driving, but you will never get to where you are going. You need to stop, ask for new directions and then start down a new path.

    You may also need to modify your expectations when things don’t work. Sometimes we are so desperate for the plan to work that we can’t bear to see the truth when the plan fails. You are not helping your loved one by continuing treatments that don’t work. You are only subjecting the patient to needless side effects and increased suffering. One thing that doctors may want to do is to try a time-limited trial of a proposed treatment option. “Let’s try it for a few days or for a little while and see how it goes.” This is a really great option. After the set time expires, you can check to see if the decision is working. If it is not working, go back through the decision making process and make a better decision based on the new information about the patient’s changing condition. Don’t be stubborn and keep driving your loved one in the wrong direction. Take this as an opportunity to turn around and get it right.

    Have a kind and respectful day.

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