KindEthics Newsletter April 2009: Communicating with the Dying

KindEthics Newsletter
The Human Side of Healthcare Ethics
Volume 1, April 2009

Quote of the Day:

“Everyone has an expiration date stamped on their butts. We
just can’t read the date.” -Viki Kind

Feature Article:

Communicating with the Dying

There are many layers to communicating with the dying. It depends
on who the person is, how they are dealing with their own dying
process, your relationship with them and so many other things. So,
what I am about to tell you works with some and not with others.
Or one communication strategy will be appropriate but the other
parts won’t fit. I trust you will know what to do as you help the
individual in front of you.

I didn’t know all of this myself until about 5 years ago when I
became a hospice volunteer. I had aging relatives that I was
responsible for and I felt helpless when it came to dealing with
their deaths. So I went through an extensive training and have
been learning ever since. I am here to share what I have learned.
The first section addresses the months before death and the last
section addresses the last days and hours of death. Both are
profoundly important.

The Early Days of the Dying Experience

People want a safe person to talk to and perhaps you can be that
person for them. You will be giving the gift of conversation to
your friend, your loved one or someone you are working with in your
professional life. As a side note, one thing I struggle with is
when someone doesn’t want to talk. I have to remind myself that
this is this person’s journey, not mine. I am only there to
support them. I tell them that I would be glad to talk to them
about their fears, concerns or hopes for how their death might go.
But I accept when they say, “No thank you.” Maybe they will be
ready another time or maybe I am not the right person for them and
they would prefer to talk to someone else. I don’t take it
personally. I stay present and meet them where they are
emotionally.

Again, everyone is unique. These are just some of the issues
people would like to talk to someone about:

-To know the diagnosis, prognosis and to choose the type of care
-To be treated as a person and not a disease
-To be in an environment of their choosing
-To talk about their fears of abandonment, pain, physical
deterioration and increasing dependence
-To be able to have their family feel they can get along without them
-To have their moods understood and accepted without judgment, such as anger, despair, guilt, denial, resistance or sorrow
-To feel that dying is a natural process and it’s okay to let go
-To be able to communicate honestly with family members regarding their feelings and needs
-To be as pain-free and alert as possible
-To find meaning in their lives, in their suffering and in their death
-To experience their remaining days with awareness and appreciation for life
-To have the respect and love of those who care for them
-To be able to remain in as much control as they are able
-To be able to complete unfinished business
-To be given a sense of purpose in the days remaining

This last one is very important. The other day someone was telling
me about their dad’s failing health. The father was still
completely competent but the daughter had taken over her dad’s
life. Her dad had lost his voice in his own life. And everyone in
the family started to over-protect him. The grandkids would come
over and they would say, “Shush, don’t bother your grandfather.”
This was a grandfather that loved his grandkids and loved
interacting with them. He could still be the grandfather. He
could still matter in their lives. He wasn’t dead yet. Instead I
told her to do her best to keep him included and to let him know
that he matters.

When people are dying, one of the most profound
questions they want answered is, “Did I matter.” Make sure you
tell them not only that they matter but why they have mattered.
Tell them what you have learned from them and how they have changed
your life. Now I realize that sometimes things do need to change
as the person becomes weaker but try to keep the person connected
and valued in the family. I know when my aunt was dying; people
would still come to her room and ask her for advice. She still
mattered. I think this is one of the reasons she held on for so
long. Her work wasn’t done. So, please help the person have their
dignity and value until the end.

The Last Days of the Dying Experience

When people are getting very close to death, maybe during the last
few days or hours, their body begins to change. Because they are
probably no longer eating or drinking, their electrolytes get out
of balance which affects the brain. (The electrolytes work as a
balancing system keeping all of the chemicals in our body in
working balance. Without the proper balance, our brain function is
affected.) Strange things may begin to happen but you don’t need
to be afraid. These signs are normal and natural and I find rather
intriguing. For instance, the person may begin to speak of being
in the presence of those who have already died. This frightens
many families and some people argue with the dying and tell them
that they are wrong or just confused. Why do we need to argue with
them? They are dying! Instead, ask them questions. Who do you
see? What do you see? Tell me about it.

I expected my father to see his mama and papa who he missed dearly and adored.
But he started talking to the empty space right next to meet and kept
saying, “Martin.” I asked him, “Mama?” But he said no, “Martin.”
Then it hit me. His best friend in his childhood and early
adulthood was Martin. His dearest friend had come to guide him on
his journey. Now some people say it is just the electrolytes
affecting the brain and triggering old memories. Others say that
it is truly a guide coming to escort the person to heaven. I don’t
know which one is true but I have been privileged to witness this
part of the journey.

Another thing that happens is that the dying will speak of
preparing to travel or to change. My dad did this. He kept
saying, “The train is late, I have to get on the train.” This is a
common one I have seen many times. Sometimes it is a bus or a
plane or other. But it is a message which tells the loved ones
that the time is getting closer. Other people talk of seeing a
place. Again, ask them about it. Reassure them if they are
confused or frightened. Let them know that they are safe and
whatever they are seeing is okay. Another interesting thing is
that many people will know the time of their death or will keep
asking what time it is. As you begin to leave and you say, “See
you tomorrow.” The dying person might tell you, “No you won’t.”
Sometimes it is absolutely true and sometimes it is wishful
thinking as the person is ready for their journey. The main thing
to remember is that the confusion of the dying is normal. They are
disconnecting from this world and letting go of what has held them
here. There mind is now somewhere else. And this is okay. Again,
don’t argue or judge or discount their experience. Enjoy the ride
with them.

One thing that happens sometimes a few days or a few hours before
death is that the person may have a sudden burst of energy. This
is a gift. For some reason, many people who have been sleeping all
of the time, suddenly wake up and start talking again. This can be
very confusing for their loved ones. They believe that a miracle
is happening and that the person is going to get better. What they
don’t realize is that what is really happening is that death is
even closer. My friend, Amber, told me about her dying horse. Her
beloved horse was dying. He couldn’t leave the stall or walk
anymore. The day before he died, he got this sudden burst of
energy and went out and played with the other horses for a few
hours. The vet had warned her about this phenomenon so she looked
at it as a gift. Her horse had one more bright moment in his life.
And then, hours later, he died a good death. So, enjoy the moment
if you are lucky to get it. If someone comes back to you for a few
minutes or hours, remember it is not going to last forever. Say
anything else you need to say and be grateful you got the chance.

Near the very end, the person will become very unresponsive. That
doesn’t mean that they can’t still hear you or feel your touch.
Talk to them as if they are still with you. Be cautious about
talking about things you wouldn’t usually say in front of them. I
have witnessed families saying in the room, “So what does the will
say?” while the person is still alive. One of the best ways to
communicate with the dying is by touch. Put some lotion on their
hands or their feet and give them a massage. Climb into bed and
take them into your arms. Think about how you would comfort a
child. You would stroke their head, cuddle with them and make them
“feel” loved. As death approaches, tell them you loved them and
that it is okay for them to go. People will hold on for a long
time waiting to hear these words. They want you to say, “I will
miss you but I will be okay. The family will be okay. You taught
me what I need to know so I will be okay. We will take care of
each other.” Or any words like that.

Also, remember that some people need to die alone to protect their
loved ones. Over and over again, nurses will tell me of a spouse
who sits vigil day after day. They never leave to bathe or to eat.
And finally after days of waiting, the spouse gives in and says,
“I am just going to run and get a cup of coffee in the cafeteria.”
And as soon as the person leaves, the patient dies. The spouse
comes back and is devastated that they weren’t there and that they
missed it. I know people that have been shattered by this
experience. But what they didn’t know is that their loved one was
protecting them and didn’t want to put them through witnessing
their death. It wasn’t that the spouse didn’t matter; it was that
the spouse mattered too much. With my dad, he kept holding on for
days and days. Finally I said to him, “I know you need to do this
alone. I am going to go now dad. I love you and I know you won’t
be here when I get back. Goodbye.” I went outside and 20 minutes
later he was gone.” I was glad he was able to let go and do it his
way. People do have to die on their own terms. We can’t control
the process. Even when people are really out of it, they still
seem to die their own way. At the opposite end of the spectrum,
many people can’t let go until either a person or certain people
have arrived. My recent hospice patient was like that. I was
surprised he was still there when I visited him. He had every
physical symptom of impending death but he was still holding on. I
realized his brother was due in about 3 hours and then I
understood. He held on for the brother’s visit and then he died
peacefully.

Ultimately, you just don’t know. You don’t know what your loved
one will need until you are in the moment. Whatever happens is
okay. And you don’t have to be perfect. Just be present and
loving. I always feel so honored to be a part of a person’s dying
process, whether I get to be present in the early days as they are
coming to terms with their approaching death or in the last moments
of the person’s life. It is an incredibly intimate experience and
one that I have been privileged to be a part of. I hope you can
find the beauty and profound nature of the experience as well. If
you have other questions, feel free to contact me at
viki@kindethics.com.

Subscribers Comments:

Elizabeth P from New Jersey
“Viki helped me in my crisis. There was no wait, no down time, and
she knew her stuff!”

Wheelchair Etiquette and Safety aka The Day Aunt Berda Rolled Away

Dear Viki,

Why don’t people help when they can see you are in trouble? The other day I was trying to get my father in his wheelchair through a narrow doorway when some guy pushed his way through ahead of us and then let the door slam on my father’s foot.

As someone who has been pushing relatives in wheelchairs for 25 years, I know how difficult it can be when nobody will open the door or give you a hand. I also hate it when someone parks really close to the edge of the handicap parking space. I remember trying to get my mother, who could barely stand, out of the car and into her chair. Even on the best of days, it wasn’t easy. And when someone parks too close, then you can’t roll the wheelchair up, put the chair at an appropriate angle and then get the person out safely.

The other day, I saw it again, a lady trying to push her mother in a wheelchair through a heavy door. Nobody stopped to help. I did because I know that it isn’t easy to manage a heavy door with one hand and try to push a heavy wheelchair through the doorway. So please notice the next time you see someone struggling, stop and ask if they need help. Always ask first. And then respect their answer and provide help if they would like you to help.

And one more thing, don’t forget to always use the brakes on the chair. Not some of the time, all of the time. One day I forgot to and my aunt went rolling down the parking lot incline. She and I had a good laugh about it because we knew she could stop herself, but the man who came running across the parking lot to help didn’t know that and was in a panic. We felt badly that we had scared him. After that, Berda and I set the brakes to protect her and those good people that cared about her safety.

Have a kind and respectful day.

Alzheimer’s resources, thank you Suzanne Holman, listen to the interview http://tinyurl.com/qx2g8g

http://www.AlzheimersintheFamily.com
Blog and website
Sign up for the free monthly Gathering Call

http://www.Alz.org
Alzheimer’s Association

http://www.nia.nih.gov/Alzheimers/
ADEAR
Alzheimer’s Disease Education and Referral Center of the National Institute of Health

http://www.hbo.com/alzheimers/
HBO The Alzheimer’s Project

http://www.geoffreybeene.com/alzheimers.html
ABC Nightline report on Alzheimer’s disease, featuring Meryl Comer, President of the Geoffrey Beene Gives Back® Alzheimer’s Initiative.
37% risk….two of the markers for Alz

www.askdrjamie.net
Weekly National Telephone Support

The Alzheimer’s Association
The Alzheimer’s Association site offers a wealth of helpful information for patients, family members, and care givers. Well- organized and easy to use (including a full index and search engine), it includes information about the organization and its many chapters; resources for care givers; medical and public policy information; a suggested reading list, a schedule of conferences; and links to other Internet resources, including sites maintained by local chapters of the Association.
Alzheimer’s Disease Education and Referral Center

The ADEAR Center, a service of the National Institutes on Aging, provides a wealth of information about Alzheimer’s disease for Alzheimer’s patients, families and caregivers. The site offers research updates, referrals to other Alzheimer’s centers, a list of publications, a clinical trial database, and a calendar of events.

Ask NOAH About Alzheimer’s Disease
Ask NOAH About Alzheimer’s Disease is a section of NOAH: New York Online Access to Health, an extensive site provided by a group of organizations including the New York Academy of Medicine, the New York City Department of Health, and the New York Hospital- Cornell Medical Center. Written in clear lay language, it includes information about the causes and symptoms of Alzheimer’s disease; the latest treatments; suggestions for care givers; and resources and links for further information.

Alzheimer’s Research Foundation
The Fisher Center for Alzheimer’s Research focuses on finding a cure for Alzheimer’s Disease while providing research studies, information about caring for people with Alzheimer’s and understanding more about the disease.

Alzheimer’s Resource Room
Disease information and tips for caregivers are provided at this US Department of Health and Human Service site.

http://www.dana.org/news/braininthenews/ Brain in the News

When you are standing alone in the hospital waiting room and don’t know what to do next, you can call me.

I remember when my mom was dying and I was sitting vigil with her in the hospital on the last day of her life. My brother, who I was close to, said to me, “There really ought to be someone who can help people with this.” And what he meant by “this”, it was the dying process. I said to him, “This is what I do, I am a hospice volunteer.” My brother knew me very well and knew that I worked with the dying, but he couldn’t imagine what that meant. And if he couldn’t imagine what a hospice worker does, then a lot of people may be confused or unsure.

But it is not just hospice that people have questions about. There are so many new things to deal with when a loved one is sick. There are specialists who can help you make your home safer for the patient, help you with applying for disability benefits or help you make decisions about both the short and long term plans.

I get called by so many people, whether it is for help during the dying process, help with figuring out what to decide when the patient can’t speak for themselves anymore or how to deal with a conflict in the hospital. You aren’t alone. I can help you when you are standing in the hospital waiting room asking yourself, “Am I doing the right thing? What do I do next?” You can run it by me and I will walk you through it.

Have a kind and respectful day.

Your Patients May Not Know How To Get The Help They Need.

I remember when my mom was dying and I was sitting vigil with her in the hospital on the last day of her life. My brother, who I was close to, said to me, “There really ought to be someone who can help people with this.” And what he meant by “this”, it was the dying process. I said to him, “This is what I do, I am a hospice volunteer.” My brother knew me very well and knew that I worked with the dying, but he couldn’t imagine what that meant. And if he couldn’t imagine what a hospice worker does, then a lot of people may be confused or unsure.

We can’t assume that our patients know how to get what they need. They may not even know what they need. They don’t know that there are specialists who can help them make their home safer for the patient, help them with applying for disability benefits or help them make decisions about both the short and long term plans. As professionals, you need to help them access the appropriate resources. If as a physician you don’t have the time, then make a referral to a social worker who can help the family cope with their changing life and health situation. Or find out what resources are available in your community and help them make the connections yourself.

I get called by so many people, whether it is for help during the dying process, help with figuring out what to decide when the patient can’t speak for themselves anymore or how to deal with a conflict in the hospital. You aren’t alone. I can help you when you are wondering, “Am I on the right track here? Am I doing the right thing?” You can run it by me and I will talk you through it.

Have a kind and respectful day.

Most people on their death bed will ask, “Did I matter?” Here is a dying ritual to help you with this question.

One of the universal questions that people ask themselves when they are dying is, “Did I matter.” It doesn’t matter what religion you are or if you have no religion, we all hope that our life has made a difference. Whether you are interacting with your loved one or if you are a healthcare professional caring for a patient, this is something that you can help the dying with. Let them know directly how they have made a difference in your life. Tell them if you have learned something from them, if they have made you laugh or if they taught you how to be a better person. The person will have a more peaceful death knowing that their life had a positive effect on this world.

A wonderful ritual you can do with the dying is the rock ceremony. Even if the person is unconscious, you can still do this ritual. Here is how it works. Each person who cares about the dying person gets a rock. Any rock. It can be a special rock they pick out or just a rock from the garden. One by one, each person walks into the bedroom or hospital room of the patient and lays the rock on the person’s chest or lap. As they do this, they should say, “This rock represents what you have taught me, done for me, helped me with… You have made a difference in my life. Thank you.” Or words like that. You will know what to say. Young children can do this ritual as well. They might just say, “I like it when you read to me or take me to get ice cream.” It doesn’t matter how small or big, just that the person matters. As each person places the rock on the patient, the patient can literally feel the weight of their effect on the world. It is a powerful way to say thank you and goodbye. I hope that on the day you die, you will know that you have mattered too.

Have a kind and respectful day.

“How do I know it is time for hospice? – Information for doctors and their patients” with Dr. Christian Sinclair, on May 29th, 2PM pst

Dr. Christian Sinclair, “How do I know it is time for hospice? – Information for doctors and their patients. on May 29th, 2PM pst”

Dr. Christian Sinclair is a palliative care expert and is the co-editor of the Pallimed: A Hospice & Palliative Medicine Blog. http://www.pallimed.org/     Dr. Sinclair is the Associate Medical Director of the Kansas City Hospice and Palliative Care. www.kansascityhospice.org He is also on the Board of Directors of the American Academy of Hospice and Paliative Medicine.   www.aahpm.org

You can also contact Dr. Sinclair on Twitter: @ctsinclair

About Me (Christian Sinclair)

My medical training started at the University of California, San Diego, which I completed in 2000. From there my wife, Kelly, our dog and I went to North Carolina for 4 years for my Internal Medicine residency at Wake Forest. My 4th year was spent doing a palliative medicine fellowship at the Hospice and Palliative Care Center. I now have been working since the summer of 2004 at Kansas City Hospice & Palliative Care as a associate medical director. I was also the fellowship program director for the KC Hospice Palliative Care fellowship from 2006-8. I am a big advocate for palliative medicine fellows, and have been the chair of the AAHPM professionals-in-training special interest group (PIT-SIG). I was elected to the AAHPM Board of Directors in 2009.   www.aahpm.org

Bo Bradley on Thursday, May 28th at 3:30 pst on blogtalkradio.com/kindethics about “Preventing Caregiver Burnout.”

I will be interviewing Bo Bradley on Thursday, May 28th at 3:30 pst on blogtalkradio.com/kindethics about “Preventing Caregiver Burnout.” She will discuss what is burnout and what leads to it, then she will give you tools and strategies to manage the burnout. To find out more about Bo, check out her website at http://www.UniversityOfManifesting.com

Are you the patient’s advocate or a bully?

This might be painful to read, but you may be making things worse for your loved one. Now I am a big believer in advocating for what you need in healthcare but there is a line which shouldn’t be crossed. And the line is when you start bullying the members of the healthcare team. Here is what this might look like. The doctor says, “What you are requesting won’t work for this condition. That treatment isn’t an option.” And you say, “You have to do it anyway or I will sue you.” You will probably get your way because doctors are afraid of the “l” word, lawsuit. But what you really just got is a medical treatment that will not work for your loved one and will only give them toxic side effects. Are you sure that’s what you meant to do?

If you truly want to know if a treatment is appropriate, ask for a second or third opinion. If you can find a doctor that will give you what you want, then change to that doctor. But if after you have asked 2 or 3 other doctors and they all tell you no, then you need to realize what you are getting is good medical advice. If everyone around you reacts negatively to you, it is not everyone being the problem, it is you. So if all the doctors and nurses are a “problem”, then perhaps the problem is you. You may be a bully.

You may think that if you become loud and demanding then you will get what you want. It doesn’t work that way in hospitals. You may get what you want but you will destroy the relationship between the patient and the doctor. And did you know that if the patient trusts the doctor, they will actually heal faster? It’s true. So when you damage the relationship, you are damaging the recovery process. And again, your good intentions will cause harm.

The doctors and nurses will start avoiding the patient’s room and spend less time interacting with you and the patient. And you and your loved one will become known as the “problem in room 321.” Every nurse that comes on shift will be warned about you. And again, that doesn’t get you what you want.

If you want to get more, be kinder and more appreciative. I always tell people that if you want to get better care, bring snacks to the nurses. Say thank you to the doctor. Make them want to spend more time thinking about your loved ones health and more time talking to you and the patient. Be a part of the healthcare solution.

Have a kind and respectful day.

When the patient or family member is a bully?

I don’t have to tell you when a patient or their family member is bullying, you know. Nobody says the word “bully”, but that is what is going on. People bully the doctor to get what they want because they are desperate, afraid, guilty or any number of emotions. They want you to save their loved one so they can resolve their issues with the person. Maybe they haven’t been a good daughter or haven’t said sorry, so they try to make you do something you can’t do. Save their loved one. So what can be done?

The first thing to know is that you have something called professional integrity. And this is not a small thing. It is one of the four state and federal interests. The four interests of the government are:
1. To protect people from death
2. To protect people from suicide
3. To protect vulnerable populations
4. To protect the integrity of medicine

Of all the things the government could have wanted to protect, they chose you, the healthcare professional. They understand that what you do is special and you need to be able to exercise your medical integrity and not have to give in to patients demanding treatments that aren’t good for them and will not work. Even the AMA supports you in this. They state that you don’t have to give a patient a particular treatment just because they demand it. It still has to be “good medicine.”

So what can you do when you find yourself up against a bully? Stop the bullying the minute it starts. Every time you give in to their demands, they get more powerful and they think they can get away with it. You need to be firm and state, “I won’t give your loved ones treatments that will not work. I will not subject them to the toxic side effects without the chance of any benefit.” And you have to say it with courage and strength. You don’t have to be hostile, just confident.

The next thing you can do is to make sure you offer something else instead. Most of the time when we say no to a patient, we don’t give them another choice, we just say no. When you are going to say no, then be sure you have a number of other things you are going to offer. Even if it is as simple as improving their pain management, putting them on hospice, getting the social worker to contact their religious leader or … Every time you give up your authority, you are changing the standard of care. If all of the doctors keep giving it up to bullies, then the standard of care will be that bullies get to dictate medical care. A famous bioethicist, Larry Schneiderman says, “Use it or lose it.” Right now you have the right to say to bad medical treatment demands, but you must exercise that right in order to keep it.

Have a kind and respectful day.

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