CARING FOR THE DYING Deborah Medakovich RN, MSN, ACHPN
September 4th, 2014
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Each patient deserves to understand their diagnosis, the
probable course of his/her disease, and the likely timetable.
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Each deserves to be asked about personal goals and to be an
informed participant and help decide about treatment options.
Otherwise it means someone else is deciding how we live and how we
die.
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Doctor-patient conversations of this sort are a fundamental
right and a basic element of good care.
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SELF EXAMINATION What are our lifes values and beliefs? What
are our usual reactions to certain questions, situations or people?
How do we feel in emotional situations, for example, when people
cry, or express grief or anger? What are our particular
interpersonal strengths? In what situations do we function
particularly well?
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NOW, THINK OF YOURSELF AS A PATIENT AND ANSWER THESE
QUESTIONS:
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AGAIN THINK OF YOURSELF AS A PATIENT. HOW INVOLVED DO YOU WANT
YOUR LOVED ONES TO BE?
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EXPLORATION UPON THE JOURNEY People facing something as big as
this are often surprised at all the feelings that come up. Are you
sometimes surprised or alarmed at the depth of feelings you have?
Ask yourself, Is what I am about to say or do meant to make me feel
better, or does it honor the style and tempo of anothers
process?
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CONSIDERATIONS? What does it mean to lose ones health? What
does it mean to experience steady decline? How do people cope with
physical limitations? What impact does life-support have on ones
spirit? What can people control when so much of their life is not
in their control? How do people deal with repeated
disappointments?
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CONSIDER ILLNESSS IMPACT ON LIFE Physical Tasks Time and
Logistics Financial Costs Emotional Burden Physical Risks
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WHAT WE CAN DO. Reconstruct and review- the trends But my
oncologist said. (Doing well for a dying patient?)- Distinction
between organ system disease vs. constitutional decline But the MRI
showed
WHAT DO YOU SAY TO THE DYING PATIENT? VERY LITTLE. Be
evocative. Elicit and listen to what is going on in the mind and
heart of the person. If they dont want to talk about their illness:
What was your life like for you before you got sick?
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Listen for symbols or cues for healing in the stories. Beware
of the unaffirmed assumption. Every patients story connects somehow
to your own. Whats been important in your life?
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MANAGE ..EXPECT Anticipating Crisis Orders should include
specific detailed instructions about the purpose of the medications
and how to use them in a crisis situation.
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THE GIFT OF PRESENCE Focus on the here and now. Forget what you
were doing right before you entered the room of the dying person
and what you will be doing after you leave. Make a conscious
decision to attend completely to the dying person; refuse to focus
on your own experiences and feelings. BE IN THE MOMENT! As you
discipline your mind to concentrate on what is happening in the
moment, be aware of negative thoughts that will filter and distort
what the person is saying to you, both verbally and nonverbally. Be
open and spontaneous.
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PRESENCE Listen to the persons words, and listen just as
closely to her/his non verbal communication. Watch the eyes, the
facial expressions and the gestures. These may communicate more
loudly than anything he/she says. Dont be afraid to be silent.
Respect the power of long pauses. Resist thinking that your dying
person is not communicating because he/she is not speaking. Respond
to the persons verbal and nonverbal communication by giving verbal
and nonverbal feedback, asking questions, giving responses, and
encouraging elaboration. Elicit his or her story by simply stating,
Please tell me more about how you are feeling (or about what you
are experiencing)
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WHAT IS MINDFUL PRESENCE Be constantly aware that being with
the person may be as comforting as doing something for him/her.
Listen with your heart as well as your ears and eyes. Facilitate
and encourage an environment for active, deep listening through
nonverbal communication that conveys immediacy (physical proximity,
eye contact, and touching when appropriate. Be physically and
emotional accessible to the dying individual. Reference: Palliative
Care: The Gift of Presence by Sandra L. Ragan, PhD June 13,
2013
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DYING IS AN INDIVIDUALIZED PERSONAL EXPERIENCE There is no
typical death Preferences, goals, wishes Who is advocating for the
patient choices ?
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WHAT IS A "NATURAL" DEATH? A man pressured his pregnant wife
into trying a "natural" birth, without an epidural for pain. Years
later, the man started experiencing crushing chest pain. His wife
brought him to the emergency department. He was diagnosed with a
heart attack. The nurse prepared to give him some morphine for the
chest pain. The man's wife stopped the nurse, and said, "I think we
should let him have a 'natural' heart attack.'" Who decides why one
thing is natural, and another isn't?
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SERIOUSLY, WHAT COMES TO MIND WHEN YOU THINK OF NATURAL DEATH?
The idea of a natural death is something more like a peaceful
death, free from invasive medical interventions. Death in nature is
often violent, brutal, and messy. The same adjectives could be used
to describe a code
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OPEN, HONEST COMMUNICATION Convey caring, sensitivity,
compassion Provide information in simple terms Prepare
patient/family for dying process Maintain presence Be sensitive of
culture/religion
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WIRED FOR LIFE In the context of medicalized dying and absence
of shared meaning, patients and family members often become
frustrated, helpless, and uninvolved spectators of the dying
process.
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TREATMENT VERSUS COMPANIONING IMPORTANT TIPS Honor present
circumstances as important. Welcome a new normal. Accept and honor
distress as important to the healing process. Patient should guide
the journey. (Uncharted territory, no map provided).
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IMPORTANT TIPS All outcomes are valuable, rich in learning.
Quality of care measured by how well we allowed the patient to
guide. Patient and families express their fear differently, and
cope as best they can. Denial represents the rate of speed one
moves toward a frightening reality. It is matched with patience and
compassion
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HOW TO TALK END-OF-LIFE CARE WITH A DYING PATIENT - ATUL
GAWANDE http://www.youtube.com/watch?v=45b2QZxDd_o
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BEST PRACTICE IN THE LAST HOURS AND DAYS OF LIFE Current drugs
are assessed and non-essential ones discontinued As required
subcutaneous medication is prescribed according to an agreed
protocol to manage pain, agitation, nausea and vomiting and
respiratory tract secretions Decisions are taken to discontinue
inappropriate interventions The ability of the patient, family, and
carers to communicate is assessed The insights of the patient,
family, and carers into the patients condition are identified
Religious and spiritual needs of the patient, family, and carers
are assessed Means of informing family and carers of the patients
impending death are identified Family and carers are given
appropriate written information The general practitioner is made
aware of the patients condition A plan of care is explained and
discussed with the patient, family, and carers From National
Institute for Health and Clinical Excellence, 2004.12
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DYING PATIENT There is an overwhelming sense of disquiet and
absence of solitude in the contemporary dying experience. The need
for support and empathy is enormous and is often both unexpressed
and unaddressed. Dying persons need to know that they and their
suffering matter. Moller, 2000, p46
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When Death is Managed badly it leaves a scare that runs
Deep
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CARING FOR THE DYING What is the difference between wanting to
die versus not wanting to live this way any longer?
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WHEN THE PINK ELEPHANT IS NAMED DEATH I just remember saying,
So Tom, I hear that you're kind of getting tired of fighting, and
he would just look at me and nod. And it was kind of like that pink
elephant in the room that we didn't talk about for a while, because
I didn't know, that wasn't, that wasn't my conversations with Tom,
that's not the relationship I had. Reference: Evan Maydays Good
Death
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WHEN DID THE GOALS OF CARE SHIFT Things got worse for him. As
our options became fewer and fewerIt became less likely that he
could go back home. He wasnt bouncing back as fast or as well. You
just see this gradual sliding backwards. Hes not getting better. He
was tired of living and didnt want to go on.
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FROM COMPANIONING THE DYING: A SOULFUL GUIDE FOR CAREGIVERS BY
GREG YODER Active Listening: Never miss a good chance to shut up.
Ken Alstad Ellie Mae (a Hospice patient) asked defensively: So,
what is it you think you can do for me?
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RESPONSE I dont know, Ellie Mae, but I can make you this
promise. For whatever time we spend together, I will never back
away or be afraid of anything you need to say about what youre
going through. I have no expectation for you to meet and in my
eyes, you will always be acceptable however you feel or whatever
you want to talk about.
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THE GIFT OF PRESENCE Focus on the here and now. Forget what you
were doing right before you entered the room of the dying person
and what you will be doing after you leave. Make a conscious
decision to attend completely to the dying person; refuse to focus
on your own experiences and feelings. BE IN THE MOMENT! As you
discipline your mind to concentrate on what is happening in the
moment, be aware of negative thoughts that will filter and distort
what your loved one is saying to you, both verbally and
nonverbally. Be open and spontaneous.
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DONT FORGET THE CAREGIVER Oliver said, "(The) big surprise for
me, personally, is that I'm not afraid to die. I thought I would
be. I'm a gerontologist. I studied the frail all my life. Debbie is
the care-giver. It's all the care-givers out there who are
suffering."
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SUSANS STORY Oh God the pain is so great. To go to sleep and
feel normal, then awake with such pain! Why has God deserted me? I
want to die. I cant live with this newness. There are so many tubes
coming out of my body. Every orifice. I have no energy to do a
simple thing like open my eyes. I cant help to feel that my body is
a traitor. Moller, 2000, p33
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SUSANS STORY Hours fade into days into weeks. I dont know if it
is day or night now. Mark is with me and he wets my mouth with cold
ice pops. Does he know how wonderful that feels? I feel like humpty
dumpty, no one can put me back together again. Sometimes its easier
to just let go, to die, than to go on living. Moller, 2000,
p33
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DYING PATIENT The feeling of aloneness is pervasive and
destructive. There is a troubling inability of loved ones, friends,
and the broader community to understand the newly created world
that a dying person inhabits. Moller, 2000, p46
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WHAT DYING PEOPLE WANT. The right to be treated as a living
human being. The right to maintain a sense of hopefulness, however
changing in focus it may be. The right to be cared for by those who
can maintain a sense of hopefulness, however changing this may be.
The right to die in peace and dignity. Kessler, 1997
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THE PALLIATIVE CARE RESPONSE TO THERE IS NOTHING MORE THAT WE
CAN DO We can provide aggressive comfort measures. We can set up a
pain management program and reassess it constantly. We can allow
open visiting. We can let you bring your pet..
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THE PALLIATIVE CARE RESPONSE. We can improve the quality of the
time you have remaining. We can let you participate in the ending
phase of your life. We can address your suffering and pain. And
when the time comes, we can manage your dying, just as you want it.
Kessler, 1997
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FAMILY SUPPORT Frequently asking these questions of healthcare
providers: Should we talk to him/her? What should we say? What
should be do when we are here? We are just so afraid of not doing
the right thing.
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CLINICAL CHALLENGES Decline in mobility Decreased food intake
Decreased fluid intake Inability to swallow medicine End stage
delirium Dyspnea in the final hours/days Terminal Secretions
Pain
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First- What wont happen No surprises- Define the last moments-
No struggle i.e. SOB (CHF/COPD), Szs Describe last moments- quiet-
gradual process of letting go- the last breath Physical signs-
Respirations (variable resp rate vs air hunger, apnea), mottling,
secretions Cases of anemia, renal failure, hepatic
encephalopathy
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PREACTIVE DYING PHASE (7-14 Days prior to death) Weakness and
lethargy Increased dependence on caregivers Bedbound status in
formerly active patient Increased sleep Progressive disorientation
Limited attention span or withdrawal Restlessness
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Decreased interest in food and fluid Difficulty swallowing Loss
of bladder and/or bowel control in previously continent patient
Clouding of consciousness
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ACTIVE DYING PHASE (2-3 days prior to death) Clouding of
consciousness Decreased responsiveness to external stimuli Eyes
glassy, pupils unfocused No interest in food or fluid Abnormal
respiratory patterns Blood pressure and pulse difficult to obtain
Hypotension Progressive cooling and mottling of extremities
Terminal congestion
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Family members present have been educated about the above
changes expected during the dying process. They expressed
understanding and have had all questions answered to their
satisfaction.
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Reference: 20 Common Problems in EOL Care. Authors: Kinzbrunner,
BM; Weinreb, NJ, Policzer, JS. McGraw-Hill Publishers. 2002, p.
242. Justifications: 1) Medicare Hospice Conditions of
Participation 2) VA Hospice Standard of Care [Family is educated on
the signs and symptoms of approaching death]
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REFERENCES Ahmedzai S. Palliation of Respiratory Symptoms, In:
Doyle D, Hanks GWC, MacDonald N, editors. Oxford Textbook of
Palliative Medicine, 2 nd ed Oxford: Oxford University Press:1998.
p583-616 Berry, P., & Griffie, J. (2006). Planning for the
actual death. In B. R. Ferrell, & N. Coyle (Eds.), Textbook of
palliative nursing (2nd ed., pp. 561- 577). New York, NY: Oxford
University Press. Bruera E, Miller L, McCallion J, Macmillan K,
Krefting L, Hanson J. Cognitive failure in pateints with terminal
cancer: a prospective study. J. Pain Symptom Management.
1992;7:192-95 Callanan, M., & Kelley, P. (1997). Final gifts.
New York, NY: Bantam Books.
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Kelso, C.M., Lyckholm, L.J., Coyne, P.J., & Smith, T.J.
(2007). Palliative care consultation in the process of organ
donation after cardiac death. Journal of Palliative Medicine,
10(1), 118-126. Kessler, D. The Rights of the Dying: A companion
for lifes final momentsHarperCollins Publishers, Inc: New York:
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(1996). Care at the time of death. Largo, FL: The Hospice Institute
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