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Speaker’s Notes
Preserving Communication and Dignity at End of Life
SLIDE 2 - The Natural Dying Process
Linda
Two Dynamics – Physical and emotional-spiritual-mental
Dying is a process, a natural slowing down of the body’s systems. This process is different
for each and every individual – is as varied as the birthing process and the duration may
vary from hours to days.
Emotional transitions at life’s end
There are several works on people’s reaction to death and dying.
The first and most well-known is that of Elisabeth Kubler-Ross
Her work is entitled On Death and Dying.
Identified five stages of emotion that might experience during the dying process.
Denial or “no not me”
Anger or “why me?”
Bargaining or “yes, but”
Depression or “it’s me”
Acceptance or “it’s part of life”
People don’t move through the stages in a linear progression
People may vacillate between stages
People may stay in one stage until death.
Fear is often an element when an individual encounters the prospect of death/dying.
Emotionally and physically based reasons that people might fear death
fear of helplessness
fear of dependence on others
fear of physical faculties
fear of mutilation by surgery or disease
fear of uncontrollable pain
fear of being unprepared for death
Socially based reasons that people might fear death
fear about separation from family or home
fear of leaving behind unfinished tasks or responsibilities
Interventions that health care professionals might offer
talk as needed
avoid superficial answers, i.e. “It’s God’s will”
Provide religious support as appropriate
Stay with the patient as needed
Work with the family so they might be strong enough to offer support to the dying
person.
Physiology of Dying
Constitutes a series of irreversible events that leads finally to cell destruction and death.
Causes of death vary, but body goes through many physiological changes that occur with
each event of death.
Physiological death preceded by an irreversible death of all vital systems.
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Digestive:
The Dying Process
Physiology of dying
A decrease in food and fluid intake at the end of life is normal and appears to be part of
the natural physiology of dying.
The dehydration of the natural dying process is frequently isotonic, with the only attending
symptom consistently being the complaint of dry mouth. This symptom
may be readily palliated through the use of lubricants and ice chips.
The symptom is NOT relieved by parenteral hydration.
Nutritional deficiency at the end of life produces a metabolic state of ketosis that
reinforces the lack of desire for food intake. Together, isotonic dehydration
and ketonemia can be understood as adaptive physiologic responses within
the natural dying process.
Since eating has important social meanings, it may be difficult for family and friends to
witness inability to eat.
However, changes in metabolism mean that we do not need the same amount of food and
fluids as a healthy person.
Respiratory System: lungs
Unable to oxygenate the body enough for adequate gas diffusion
Respirations become stridorous or noisy, leading to “death rattle”
Cheyne-Stokes respiration sign of pulmonary system failure
Breathing may become more irregular, labored, and noisy. This does NOT mean that the
patient is uncomfortable or in distress. The person's regular characteristic breathing pattern
may change with the onset of a different breathing pace which alternates with periods of no
breathing - Consists of alternate hyperapneic and apneic phases . This is called the
"Cheyne-Stokes" symptom and is very common. It indicates a decrease in circulation in the
internal organs. Elevating the head may help bring comfort.
These phases alter the concentration of carbon dioxide in the body - reducing the level.
Sensors within the body prevent the body from breathing in order to increase the level of
carbon dioxide.
Never able to reach an adequate balance, and ultimately respirations cease.
Cardiovascular System: heart and vessels
Heart unable to pump strongly enough to keep blood moving
Blood backs up first throughout the heart
Ultimately backs up into the lungs and the liver, causing congestion
Decreased blood causes decreased circulation to the body
skin becomes cool to the touch, pale
Person appears cyanotic, possibly mottled
In dark-skinned people, perfusion and oxygenation of the body is determined by mucous
membranes and palms of hands and feet.
Failure of peripheral circulation frequently results in a drenching sweat cooling the body
surface.
Pulse becomes weak and thready, ultimately irregular
A stronger pulse will mean death is hours away
A weak, irregular pulse means that death is imminent in the next couple of hours.
An apical pulse might be required.
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Metabolism rates decrease as the cardiovascular system fails.
The person might retain feces or become incontinent.
Urinary output decreases.
Neurologic function decreases with decreased oxygen to the brain.
Sensation and power of motion as well as reflexes lost in legs first, then arms.
Dying person turns toward light as sight diminishes.
Dying person hears only what is distinctly spoken.
Touch sensation diminished - pressure remains
Dying person might remain conscious or become unconscious/comatose
Some dying people rally in clarity and consciousness just prior to their death
A person’s eyes might be open even if unconscious
Dying people might turn toward or speak to someone who is not visible to anyone else in
room
Pupils might be sluggishly reactive to light or not react
Pain might be present
Pain medication should not be withheld as person nears death.
If unconscious or unable to talk - assess for restlessness, facial expression (i.e. frown), or
tightness of muscles.
There may be changes in responsiveness. The patient may be more difficult to arouse
with generalized weakness.
Even if the patient is not responding, please remember hearing may be very acute. Do
continue to communicate and comfort the patient by talking to them and gently touching
them.
There may be changes in urinary function, such as incontinence (loss of bladder control)
or decrease in the amount of urine.
A temperature elevation is not unusual at this time.
Restlessness due to pain, fear, discomfort or due in part to the decrease in oxygen
circulation to the brain and to metabolic changes
Signs of Nearing Death Awareness
People who are experiencing signs of nearing death awareness may:
Appear confused and disoriented.
State that they have spoken to those who have already died.
Speak to people and see places not visible to you.
Describe spiritual beings and bright lights.
Talk aloud to people who have died before them, such as their mother, father, or
close friend.
Make "out of character" statements, gestures or requests.
Describe another world of peace and beauty.
Tell you exactly when they will die.
Make hand gestures, reach for or hold unseen objects, or wave to unseen beings.
These behaviors do NOT mean that they are confused, hallucinating, or having a reaction
to their medications. It is believed that the person is beginning to transition from this life.
The person may be trying to describe the dying experience or something they need to do
before they die.
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These messages of the dying may be a symbolic communication to ask for permission to
die or address a need.
Some things they may need include
resolving previous conflicts
receiving a visit from a friend
knowing that you will be okay without them
What they say often has meaning to them and is linked between this life and death.
Final Gifts by Maggie Callanan and Patricia Kelley - When patients experience nearing
death awareness and describe death as peaceful, they are providing others with a better
understanding of the death experience. This may be their final gift to you.
SLIDE 3 - Identifying “End of Life”
Linda & Michelle
Identifying the EOL Patient – It is difficult to prognosticate end of life
Evaluation of the EOL patient differs from a patient who is expected to make a reasonable
degree of recovery in that the SLP needs to spend additional time communicating with the
healthcare team. The team must come to a consensus concerning the patient’s
medical prognosis in order to develop a plan of care that is consistent across all
disciplines. This allows the team to “speak with one voice” when discussing sensitive
information with the patient and family therefore, minimizing confusion regarding the plan of
care.
MDS Trigger Guide For Palliative Care (Tool #A-3)
- Can ID a patient likely to benefit from Palliative Care
- Determine the scope of palliative care needs and care planning required on an
ongoing basis
Other Tools……..
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Brown’s End of Life Decision Tool – E. Brown and colleagues
Brown’s End-of-Life Decision Tool helps to visualize the process of
identifying the patient nearing end of life by weighing the patient’s
premorbid level of function against their medical status.
A. For example, if a patient with a from intervention. high premorbid
level of function suffers an acute event and is medically stable, she has
a reasonably good prognosis and will likely benefit
B. Conversely, if a patient with a low premorbid level of function suffers
an acute event and is medically unstable or critically ill, s/he may be
nearing the EOL and may not benefit from aggressive intervention.
C. If a patient with a compromised premorbid medical and functional
status suffers an acute event, the patient’s ability to benefit from
intervention may be unclear. A trial treatment period is helpful to
determine whether treatment will be beneficial and if recovery is
possible.
SLP NEEDS TO WEIGH:
1. swallow prognosis
2. nutrition/hydration options
3. patient’s medical prognosis.
We need to ask, “How close is this patient to end of life?”
Distinction between Hospice and Palliative Care (controlling symptoms)
End of life status at all settings / levels of care along the continuum
Four levels of hospice care
SLIDE 4 – End of Life Issues
Linda
Hospice Team Philosophy, Impact and Goals:
Interdisciplinary members - Chaplain, Nurse,
Family component to hospice
Counseling
SLIDE 5 - Advanced Care Planning
Linda
The hierarchy of medical decision-making for incapacitated nursing home residents
The Patient Self-Determination Act, enacted as federal law in 1991, grants all persons or
their surrogates the right to refuse or discontinue treatment, and it makes advance
directives completed in any state legal and portable.
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This law also requires all medical facilities receiving federal funds to ask, at the time of
admission, whether a prospective patient has completed a written advance directive, which
usually includes the naming of a surrogate decision-maker.
Nursing facilities must document at regular intervals whether a resident has an advance
directive or has designated a surrogate decision-maker.
Hierarchy of Medical Decision-Making for Incapacitated Patients
Advance directives specified by the patient before (s)he became incapacitated prevail,
even over the contrary wishes of guardians and other surrogate decision-makers.
The decisions of the guardian or of a surrogate designated in an advance directive
prevail over all others except in the presence of a written advance directive
Decisions of surrogates, including guardians, should be guided by:
Substituted judgment (if the incapacitated person's wishes were known but not
formalized in an advance directive)
Best interest of the patient, based on clinical evidence, prognosis, life
expectancy, risk and benefit of proposed treatments, comfort and dignity
Family members and friends take precedence next, usually in the following order
Spouse
Adult children
Siblings
Other family members
Friend
Health care providers follow, in the absence of other decision-makers (not optimal)
Many long-term care facility residents have no involved family
members. The number of mentally incapacitated people in nursing
homes for whom there is no designated surrogate decision-maker
greatly outnumbers those for whom courts have appointed guardians.
This puts health care providers in the circumstance of acting as de
facto decision makers. Only a few states specify a procedure, which
guides the care team's decision making on behalf of an incapacitated
patient without a surrogate.
These legal documents have a dozen different names, but just one goal -- helping
you direct your health care if you become unable to communicate your wishes. The
documents that set out your wishes for medical care may go by various names depending
on the state in which you live: advance directive, living will, directive to physicians, medical
power of attorney, patient advocate designation, and so on. These are all terms for health
care directives -- that is, documents that let you write out instructions about the type of
health care you want to receive, including who should oversee your treatment if you are
unable to speak for yourself. Here's a brief overview to help you understand the basic types
of health care directives.
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Health Care Declaration
Many people know this document as a "living will," though it bears no relation to the
conventional will or living trust used to leave property at death. This is the document that
lets you state what type of medical treatment you do or do not wish to receive if you are too
ill or injured to direct your own care. (Among other things, it's the document you can use to
be sure doctors do -- or do not -- "pull the plug.") The document may have a different name
in your state, but you'll recognize it as the place where you write down your specific wishes
about types of medical care.
Durable Power of Attorney for Health Care
This document, also known as a medical power of attorney, allows you to name a trusted
person to make medical decisions for you if you are unable to communicate on your own.
The person you name to make these decisions is usually called your agent or attorney-infact.
You can give your agent the authority to oversee the wishes you've set out in your health
care declaration, as well as the power to make other necessary decisions about health care
matters. Some states combine the declaration and durable power of attorney into a single
form, most often called an "advance health care directive."
An Advance Directive is a formal document written by a competent person that is
designed to guide medical tx in the event of future mental incapacity.
- AD is comprehensive when it communicates the care you do and do NOT want
in specific medical situations
- Types
Living Will – Written AD – convyes what medical interventions are desired or not if
incapacitated in the furture
Health Care Proxy – terms – proxy-refers to the form or document / The person
designated to make HC / Medical Decisions is the agent, surrogate
To complete the HCP you need two witnesses, no lawyer needed
Stems from the limitations of Living Wills – it is impossible to predict every variable / detail
of illness and decide on it in advance in a Living Will
Terminally ill pts. with intact DMC can consider all the specifics of their condition(s), quality
of their life and the predicted effects of various interventions
To try to anticipate how we might respond to all possible future illnesses is nearly
impossible – this is hard enough even for the fully informed and competent individual due to
the nature and emotions associated with contemplation of death.
The HCP can address the specifics of an incompetent pt’s currrent medical condition along
with knowledge of the pt.’s healthcare values, and quality of life.
The HCP works with the medical team to make the decisions the patient would have
wanted – using the patient’s values and beliefs and not their own.
Distinction between a DPOA and a HCP or agent
You can write an advance directive in several ways:
Use a form provided by your doctor.
Write your wishes down by yourself.
Call your health department or state department on aging to get a form.
Call a lawyer.
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Use a computer software package for legal documents.
Can I change my advance directive?
You may change or cancel your advance directive (any part or person / agent) at any time,
as long as you are considered of sound mind to do so. Being of sound mind means that
you are still able to think rationally and communicate your wishes in a clear manner. Again,
your changes must be made, signed and notarized according to the laws in your
state. Make sure that your doctor and any family members who knew about your
directives are also aware that you have changed them.
If you do not have time to put your changes in writing, you can make them known while you
are in the hospital. Tell your doctor and any family or friends present exactly what you
want to happen. Usually, wishes that are made in person will be followed in place of the
ones made earlier in writing. Be sure your instructions are clearly understood by everyone
you have told.
Retrieving the Advance Directive
Make sure that someone, such as a close family member, legal advisor etc., knows that
you have an Advance Directive and knows where it is located. In the case of a health care
proxy be sure that person has a current copy. You should also consider the following:
If you spend a great deal of time in more than one state, you should consider having an
Advance Directive in each state. Be sure to keep a copy in each location that you reside.
If you have an Advance Directive -- that is, a Living Will or Medical Power of Attorney -give a copy to your health care agent or health care proxy among others.
Give your physician and the long term health care facility (e.g. a nursing facility or assisted
living residence), or other health care provider, a copy of your Advance Directive and
advise them to make it part of your permanent medical record.
Keep a second copy of your Advance Directive in a safe place where it can be found easily
if it is needed. However do not keep in a safe deposit box, as that is not easily accessible
to others.
Keep a small card on your person that states that you have an Advance Directive, where it
is located, and who your agent or proxy is if you have one.
Under federal law, when you are admitted to most health care settings you will be asked if
you have an Advance Directive. If so, the facility will want a copy as part of your medical
record.
Finally an Advance Directive may prevent anguish and turmoil within families and provide
clear guidance to health care and long term care providers. An Advance Directive should
be considered an essential component of future planning just as much as financial
planning, life or disability insurance or drawing up a will.
What You Can Cover in Your Health Care Directives
by Shae Irving, J.D.
An overview of some important medical issues you'll face when preparing a health
care declaration and a power of attorney for health care.
When creating your health care declaration and your durable power of attorney for health
care, you have many options and a great deal of flexibility. Here are some issues to
consider when preparing these health care directives.
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Your Health Care Declaration
Your health care declaration is the place to write out what you do and do not want in terms
of medical care if you are unable to speak for yourself. You don't need to become a medical
expert to complete your declaration, but it will help you to become familiar with the kinds of
medical procedures that are commonly administered to patients who are seriously ill. These
include:
transfusions of blood and blood products
cardiopulmonary resuscitation (CPR)
diagnostic tests
dialysis
administration of drugs
use of a respirator, and
surgery.
You can discuss these procedures with your doctor or a patient representative at a hospital
or health insurance plan office, or you can turn to self-help resources for more detailed
information.
Pain Relief
In addition to the medical procedures listed above, you may want to give some thought to
issues of pain medication. The laws of most states assume that people want relief from
pain and discomfort and specifically exclude pain-relieving procedures from definitions of
life-prolonging treatments that may be withheld.
Food and Water
Some states also exclude food and water (commonly called nutrition and hydration) from
their definitions of life-prolonging treatments that may be withheld. But there is some
controversy about whether providing food and water, or drugs to make a person
comfortable, will also have the effect of prolonging life.
Some people are so adamant about not having their lives prolonged that they direct that all
food, water, and pain relief be withheld, even if the doctor thinks those procedures are
necessary. Under the U.S. Constitution, you are allowed to leave instructions like these
even if your state law is restrictive; your doctors are legally bound to follow your wishes or
transfer you to another health care provider who will.
SLIDE 6 - State Specific Regulations and Their Impact
Linda
Advanced Directives are different state by state
NY and MO – Controversial area of AHN
HCP Laws passed in some states and are considering them still
Living wills and DPAs are legal in most states. Even if they aren't officially recognized by
the law in your state, they can still guide your loved ones and doctor if you are unable to
make decisions about your medical care. Ask your doctor, lawyer or state representative
about the law in your state.
http://public.findlaw.com/ - Enter your Zip code – Scroll to Estates and Probate AND State
Laws – Living Wills for an overview of each state
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SLIDE 7 – The SLP Role in Palliative Care
Michelle
„ Quality of life related to communication and swallowing
SLP role is to be humble, respectful of patient rights while
simultaneously documenting clinical results and
recommendations
„ SLP Competency and Involvement
Know your team, their knowledge, build repoire – we need to
work thru this together to benefit our patients in the highest
time of need
„ Medical and Respiratory Status - Acuity level - Training
„ SLP training in ethical and legal frameworks – Training
Who is legal the legal councel for your organization /
hospital?
Learn form them!!!!
„ SLPs objective input to the team process
We cannot and should not go it alone!!!
SLIDE 8 - Communication Best Practices at End of Life
Michelle
„ Facilitate communication of last wishes and expressions
Often times, people feel uncomfortable talking to and interacting with a person who is
dying. This is at least partly because we have no way to understand their perspective,
and what they are experiencing mentally, emotionally, and spiritually.
Studying the Kubler-Ross theory and other approaches to the dying process can help us
become more comfortable by increasing our understanding and adding insight into the
perspective of the dying person. Hopefully this can begin to help increase communication
and interaction during a dying person's last days.
Thought provoking questions for ourselves and for our patients who may be asking
themselves the same questions…
What does it mean to you to have a “good death”?
Are there aspects of dying that would provide it of personal meaning?
What are your biggest fears about death?
What would be most important to you at the end?
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The latter are questions we can help our patients verbally or non-verbally communicate the
answers to in order to help our patients and their families achieve maximal effective
communication regarding EOL philosophies and wishes
„ Communication Eval: Determine communication modes
What are the options ???? – Full Communication Eval
Verbal, Non-verbal, AAC – Low and High Tech, Trach Vent – PMV, Cap, Writing,
Simple Y/N System, Eye Gaze Board
Anything goes! All options deserve a trial!
This is it – prepare your patient – give opportunity to say what needs to be said at this
MOST important time!!!
Communication during the dying process:
(SLIDE 9) Communication Needs & Opportunities
„ Basic human need
„ Dignity
„ Emergent communication
„ Express medical and basic needs
„ Expressions of thoughts, plans, ideas
„ Spiritual
„ Pain
Giving Permission - Giving permission to your loved one to let go without making him or
her feel guilty for leaving or trying to keep him or her with you to meet your own needs can
be difficult. A dying person will normally try to hold on, even though it brings prolonged
discomfort, in order to be sure that those who are going to be left behind will be all right.
Therefore, your ability to release the dying person from this concern and give him or her
assurance that it's all right to let go whenever he or she is ready is one of the greatest gifts
you have to give your loved one at this time.
Saying Good-Bye - When the person is ready to die and you are able to let go, then is the
time to say "Good-bye." Saying "good-bye" is your final gift of love to the loved one, for it
achieves closure and makes the final release possible. It may be helpful to lie in bed with
the person and hold him or her, or to take the hand and say everything you need to say so
afterward you need never to say to yourself, "Why didn't I say this or that" to him or her.
It may be as simple as saying, "I love you." It may include recounting your favorite
memories, places and activities you shared. It may include saying, "I'm sorry for whatever
contributed to any tensions or difficulties in our relationship." It may also include saying,
"Thanks you for...." Tears are a normal and natural part of saying good-bye. Tears do not
need to be hidden for your loved one or apologized for. Tears express your love and help
you to let go.
Patient may have one good day wherein seems to be improving – possibly waiting for
others to arrive.
COMMUNICATION OF PAIN AT END OF LIFE:
ABC’s of Pain Assessment
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Ask about and Assess pain regularly
Believe the patient and family in their reports of pain and what relieves it
Choose pain control options appropriate for the patient, family and setting
Deliver interventions in a timely, logical and coordinated fashion
Empower patients and families. Enable them as much control as possible
Pain Assessment and Management
Accurate measurement of pain is critical for the assessment and control of pain
Use tools that are objective, reliable and reproducible
Assessing Pain in Cognitively Impaired Patients –Tools in Handout
Pain Assessment in Advanced Dementia
Pain Management Techniques for the Cognitively Impaired
Behavior Observation Scale
Brief Pain Inventory
Non-communicative Tool
Checklist of Non-verbal Pain Indicators
Pain Tongue Diagnosis
Behavior has meaning and may give clues to assessing pain in a patient with cognitive
impairment and/or dementia
Use pain intensity scales that are appropriate for the residents cognitive abilities
Look for:
Change in activity level or functioning, sleep patterns
Tense body language, fidgeting, rubbing body part, wringing of hands
Sad or frightened facial expressions
Vocalizations may range from hushed to negative to mournful and groaning
Breathing may be audible and appeared labored or exaggerated
Determining effective PAIN interventions:
Trigger Point Interventions
Ultrasound- 3 MHz, subthermal @ .5 watts/cm2
Spray and Stretch- spray the skin with a refrigerant than stretch the affected muscle.
Cooling the skin prevents defensive tightening of the TP by distracting it and temporarily
suppressing the pain. Follow the stretch with a MHP to keep it from drawing heat out of the
muscle
Deep Stroking Massage- Applied directly to the TP. Is the safest and most effective method
Deep Stroking Massage
Use a tool if possible and save your hands
Use deep stroking massage, not static pressure
Massage with short repeated strokes
Do the massage in one direction only
Do the massage stroke slowly
Aim at a pain level of 7/10
Limit massage to one minute per TP
Work a TP 6-12 times per day
If no relief, you are probably working the wrong spot
Rehab Interventions
Psychosocial Intervention by Rehab & IDT
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Pet Therapy
Music Therapy
Crafts/Hobbies
Stress Management
Books on Tape
Humor
Aromatherapy
Herbal Therapy
Relaxation Techniques:
Guided Imagery
Visualization
Progressive Muscle relaxation
Music/Noise
Breathing exercises
Deep breathing
Rhythmic breathing
Visualized breathing
Aromatherapy
Used as a gentle but effective method of healing mental, emotional and physical conditions.
The healing component comes in the form of essential oils that are derived from plants,
trees and grasses.
Benefits include sedation, stimulation, balancing the hormones, diuretic and pain relief.
This is accomplished through affecting the physical, mental, spiritual and emotional well
being.
SLIDE 9 - Communication Needs & Opportunities –Above - Michelle
SLIDE 10 - Cognition and Determining Decision Making Capacity
Michelle
„ (SLIDE 9) Cognition - Identification of decision making capacity
„ Assessing verbal and non-verbal communication options
„ Identification of communication opportunities
„ Facilitation of patient communication priorities
Variables in any cognitive assessment independent of dx such as delirium, dementia
or depression:
Wax and wane of cog status, meds, anxiety, time of day, environmental factors
A Framework for Assessing
Capacity to Make Medical Decisions
- Can the person make and express personal preferences at all?
- Can the person give reasons for the alternatives selected?
- Are the supporting reasons rational in the sense that the person begins with a plausible
idea and reasons logically from that premise to a result?
- Can the person comprehend the personal implications, namely the probable risks and
benefits, of the various choices presented and selected?
A framework for assessing decision-making capacity
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The capacity to make decisions implies the ability to:
communicate choices
understand relevant information
appreciate the idea of consequences, and to
manipulate information rationally
To make medical decisions, a person must be able to understand the nature of the
illness for which a particular treatment is offered, the probable course of the
illness without the proposed treatment, and the nature and consequences of treatment
options, including risks and benefits.
When determining decision-making capacity, one should attempt to understand how the
patient arrived at a decision and to recognize the influence of the patient's personal
values.
No single test or instrument is adequate to determine decision-making capacity, and the
results of any test need to be interpreted in the context of the whole
clinical presentation – the big picture.
The mini-mental status exam (MMSE), for example, though helpful as a screening tool for
detecting cognitive impairment, is neither sensitive nor specific for evaluating decision making capacity, especially in the middle range of its scoring.
Informally the best method to gain insight into DMC is:
Via asking open ended questions – “Can you describe your illness, diagnosis, what has
happened to you medically?’
Decision making capacity is reflected in consistent responses to questions
that are phrased in different ways.
Patient's performance may be improved by repetition, enhancing the disclosure
of information with visual aids and cueing, addressing psychological issues, or
facilitating family support.
Tools for Eval of DMC w/ Neurpsych
ACE – Aid to Capacity Evaluation- Dr. Etchells - Site Article
MacArthur Competence Assessment Tool for Treatment (MacCAT-T) for Eval of DMC
The assessment of decision-making capacity is often a very emotional issue, as we are
commonly asked to perform such evaluations when there is conflictbetween the patient,
family, and treatment team.
Like many clinicians, I do not use one tool for the evaluation of decision-making capacity.
It is most important to keep in mind that any evaluation of decision-making capacity should
be as specific as possible. Often clarifying the specific issue in question is helpful to both
the treatment team and the patient.
Using the basic MODEL of: Understanding, Appreciation, Reasoning, and
Communication, an evaluation of decision-making capacity can be made
in almost every case.
The MacCAT-T, which utilizes these four basic items, offers clinicians a semistructured
interview with prepared forms and a rating scale for evaluating responses. At times, it
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may be necessary to evaluate the patient on more than one occasion, and at varying
times of the day.
Neuropsychological testing is usually utilized in cases where the diagnosis is unclear,
or if the patient presents with cognitive deficits of an unusual nature.
Utilize the interdisciplinary team and significant others for collateral information, and then
listen to the patient.
State the importance of considering the Cognitive Heirarchy of Skills r/t the cog
linguistic skills required for capacity demonstration during eval.
Decision-making by mentally incapacitated long-term care facility residents
Long-term care facility residents judged to be incompetent may still possess the capacity
for making some decisions, particularly about such personally meaningful things as
what to wear and what to eat.
Among the major losses experienced by people admitted to nursing facilities are
loss of independence, loss of control over daily schedules, and often loss of the
ability to perform basic activities of daily living.
Consequently, the decisions that nursing home residents remain able to make loom large,
representing the last vestiges of personal control.
Thus it may be advantageous, for the sake of their quality of life, to ensure that even those
residents who are incompetent, and those mentally incapacitated residents who simply lack
the ability to make complex reasoned decisions, are encouraged to make those decisions
they are able to make for themselves.
The idea of providing choices to incapacitated people in the spirit of preserving and
respecting their dignity has been described as part of 'everyday ethics.'
The choices offered to mentally incapacitated people should not involve risks to their health
if they make unwise choices.
The goal is to balance the risks inherent in poor decisions against the loss of
autonomy.
SLIDE 11 - Patient Rights
Michelle & Linda
Patient right to decide if they want ANH or not
If we accept pt. right to consent we must also accept right to refuse.
Stand currently on ANH – given for family
When you reach that stage you are not hungry
Try ANH for a few days for family and if no change
Withholding is beneficial
Hydration – lip and oral care
CSB specific to Diet Consistencies
Kindred NC policy 65000 – Resident Refusal of or Failure to Follow MD Order
Follow facility policy
HD – Facility specific policies
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SLIDE 12 - Competence and Informed Consent / Refusal
Michelle
SLP DOES follow thru as part of the Palliative Care Team – but is not alone or leading
Review CSB Right to Refuse
SLP Does not terminate care
Skilled dysphagia / communication care is a decision independent of communication as a
part of the Palliative Care Team – we may or may not continue to tx a patient depending on
the big picture variables.
Difference between waiver and IC
Waiver – May be considered coersive, May limit pt. ability to come back and ask for help at
a later date if they have a change of heart – release of responsibility is not what we want!!!!
Instead – Do Use IC Process: Document pt. rationale, DMC, education and training
provided and response to that training – more important than the piece of paper
SLIDE 13 - Dysphagia Care & End of Life
Michelle
Best Practice includes bedside and possible instrumentation.
The dysphagia evaluation also includes review of the patient’s current and premorbid levels
of function, medical status, nutrition and hydration status and patient/family wishes.
SLP NEEDS TO WEIGH:
1. swallow prognosis
2. nutrition/hydration options
3. patient’s medical prognosis.
We need to ask, “How close is this patient to end of life?”
SLIDE 14 - Dysphagia Care & End of Life
Michelle
For much of the 20th centrury TFs were considered necessary tx for the advanced AD
patient with swallowing and eating issues. Yet research does not support the benefits
We have NO evidence that enteral feeding tubes benefit patients with dementia, yet more
and more patients end up with just that.
Research recommends: EOL training for all HC practitioners and palliative care consultants
in each facility.
SLIDE 15 - American Academy of Hospice and Palliative Medicine
Linda & Michelle
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AAHPM Position Statement on AHN
To provide clarity on the use of artificial hydration and nutrition, the
American Academy of Hospice and Palliative Medicine offers the following
position statement:
The American Academy of Hospice and Palliative Medicine recognizes dying as
an expected natural process in the human life cycle. AAHPM supports excellence
in end-of-life care with attention to relief of physical, psychological, spiritual,
and social distress in the dying process for patients and their families.
Hydration and nutrition are traditionally considered useful and necessary components
of good medical care. They are provided with the primary intention of
benefiting the patient. However, when a person is approaching death, the provision
of artificial hydration and nutrition is potentially harmful and may provide
little or no benefit to the patient and at times may make the period of dying
more uncomfortable for both patient and family. For this reason, the AAHPM
believes that the withholding of artificial hydration and nutrition near the end
of life may be appropriate and beneficial medical care. Clinical judgment and
skill in assessment of individual clinical situations is necessary to determine
when artificial hydration and nutrition are appropriate measures to apply.
Potential contraindications to artificial hydration and nutrition
For many patients near the end of life, the burdens of AHN outweigh its benefits.
Listing of potential complications of AHN – Refer to Table in article
Largest risk AHN poses to dying individuals is the potential for fluid overload leading to
peripheral edema, pulmonary congestion, if not pulmonary edema among other
complications.
Should these problems occur, they not only cause discomfort, but may in fact hasten the
patient’s death.
Two recent reviews of the data found no evidence that AHN prolongs life or diminishes
suffering in patients with advanced dementia.
The studies concluded that percutaneous endoscopic gastrostomy (PEG) tubes
should not be used in severely demented patients at the end of life, because the burdens
of PEG outweigh the benefits.
The authors recommend that a palliative care concept be pursued instead, possibly
because PEG tubes do not decrease the incidence of aspiration.
SLIDE 16 - Dysphagia Care & End of Life
Michelle
Family members repeatedly state they do not want their relative to “starve to death”
50% of medical professionals still believe that even if all forms of life support
including mechanical ventilation and dialysis are stopped, nutrition and hydration
should always be continued.
As a result when pt.s w/ advanced dementia start to demonstrate dysphagia or lose interest
in eating, PEG tubes are used with increased frequency.
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How can we help physicians and surrogate decision makers make compassionate,
morally sound, and technically reasonable decisions about the treatment of persons
with advanced dementia?
Ideally, such decisions should reflect the preferences and values of the patient and
should arise from a clear determination of the overall goals of care.
Unfortunately, preferences of the patient are seldom known, and the goals of care — such
as prolonging life, promoting independence in activities of daily living, or maximizing
comfort — cannot readily be translated into practice.
Surrogate decision makers for demented patients who opt for feeding through a
gastrostomy tube usually do so because they
- hope to extend life and prevent aspiration pneumonia
- because they wish to prevent suffering
- because their values, particularly their religious beliefs, dictate that
sustenance must never be withheld
Recent information supports the conclusion that tube feeding seldom achieves the
intended medical aims and that rather than prevent suffering, it can cause it.
Religious and bio ethicists have come to the conclusion that feeding tubes are not
required in patients with advanced dementia.
POLICY IDEA - Many believe that given the weight of the scientific evidence that
gastrostomy tubes are not effective and given the lack of a compelling ethical argument
for their use, many have suggested that physicians, nursing homes, and hospitals adopt a
policy of recommending that gastrostomy tubes NOT be used in patients with advanced
dementia. Why?
Do Feeding Tubes Work in Patients with Dementia?
A gastrostomy tube is placed in a patient to provide nutrition and hydration. Although in
theory tube feeding can provide adequate nutrition in a patient with dementia, in reality this
is often not the case.
Issues with TF - diarrhea, clogging of the tubes, and the tendency of patients with
dementia to pull out the tubes, nutritional status often does not improve with the use of
feeding tubes.
Aside from maintaining nutrition, one of the primary reasons to use a feeding tube is to
interrupt the cycle of eating, aspiration, and then pneumonia that is so common in patients
with advanced dementia. It is now clear from multiple observational studies that feeding
tubes do not prevent aspiration in patients with dementia.
The continued risk of aspiration appears to result from reflux of gastric contents and
aspiration of saliva.
Despite the lack of evidence that tube feeding reduces the risk of aspiration in
persons with dementia who have difficulty swallowing, the standard of care in many
institutions is to withhold oral intake and to insert a gastrostomy tube if there is
videofluoroscopic evidence of aspiration.
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But - Studies find that the patients who were fed through a gastrostomy tube and those who
continued to be fed by hand had the same survival rates.
Other studies have confirmed that swallowing or eating problems in patients with dementia
are independently associated with mortality, regardless of whether a gastrostomy tube is in
place.
These were observational studies, however, not randomized trials thus there are un
accounted for variables (vascular dementia patients, group of patients with TF were
possibly sicker…)
Explanation for failure of TF to be effective: Why are TF NOT effective???
Difficulty with eating is a marker of severe dementia, which is a uniformly fatal disorder.
Since eating is typically among the last activities of daily living to become impaired in
persons with dementia, difficulty with eating often unfortunately signals that the
person has entered the final phase of the illness.
DO Feeding Tubes Promote the Comfort of Patients with Advanced Dementia?
Families and physicians often believe that the use of a feeding tube will promote the
comfort of a person with advanced dementia. Is a person with advanced dementia who has
difficulty eating actually uncomfortable in the absence of artificial nutrition and hydration?
Due to cog-linguistic deficits, it is difficult, if not impossible, to obtain data on the
subjective experience of patients with advanced dementia who stop
eating and drinking. We can, however, try to extrapolate from the experience of patients
dying of cancer or stroke who have who are sufficiently lucid to describe their sensations.
(or use pain tools above with Dementia)
A growing literature from the hospice movement indicates that such patients do not
experience more than transient hunger and that any thirst they experience can be
alleviated with ice chips, oral care and swabs.
Moreover, many elderly patients do not feel distress from dehydration because they
have an impaired thirst mechanism which also serves to minimize discomfort.
A few observers have suggested that maintaining hydration promotes comfort by
preventing delirium, but most clinicians find that, on balance, hydration without
nutrition causes discomfort, because it prolongs the process of dying and increases
the production of urine and sputum.
Not only do gastrostomy tubes fail to prevent suffering, they may actually cause it.
The percutaneous insertion of a gastrostomy tube, the most common method used,
requires upper endoscopy, an incision in the abdominal wall, and intravenous sedation.
Once the endoscope is in place, the permanent gastrostomy tube is threaded into the
stomach, anchored in place, and pulled through the abdominal wall. Although it is a
relatively simple procedure, the long-term rate of complications has been reported to
range from 32 percent to 70 percent.
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The problems, such as superficial skin infections and dislodgment or clogging of the tube,
are usually relatively minor.
When tube feeding is used as a permanent alternative to oral feeding, patients are
deprived of the enjoyment derived from eating. Patients with dementia who are fed
through a tube no longer have the opportunity to taste food or experience the
social satisfaction associated with mealtimes. Feeding by hand is an act of nurturing that
cannot be accomplished by hanging a bag of nutrients on a pole for delivery through a
tube. – However , we also have to ask if eating is a quality experience any longer with
an oral acceptance problem or oral prep problem????
These problems might be overcome — but only in some instances and to a limited
extent — by supplementing tube feeding with the provision of small amounts of food
to persons with dementia who have difficulty swallowing.
Refer to CSB for Recreational PO.
The most serious potential adverse consequence of tube feeding is the need to restrain
the patient. A patient with advanced dementia does not have the cognitive capacity to
understand why a tube is protruding from the abdominal wall and often pulls it out. To
prevent the patient from removing the tube, the physician frequently orders the use
of restraints. In one study, 71 percent of patients with dementia who had feeding tubes
were restrained, regardless of the type of tube used.
TF presence is associated with the use of restraints in some areas and facilities – most
others are restraint free or have restraint reduction programs.
The experience of being restrained is distressing, even to persons with severe dementia,
and it often results in agitation, which in turn may lead to the use of pharmacologic
sedation.
In summary, data collected over the past decade suggest that gastrostomy tubes are not
necessary to prevent suffering and may actually cause suffering.
Is Withholding Artificial Nutrition Morally Wrong?
Most religions will weigh the risks and benefits even if they advocate for AHN at end stage.
A study of 421 randomly selected, competent persons living in 49 nursing homes found that
only one third would favor a feeding tube if they were unable to eat because of permanent
brain damage.
Moreover, 25 percent of the respondents who initially favored tube feeding changed their
minds about its acceptability when they learned that they might have to be physically
restrained to facilitate use of the tube.
Obstacles to a New Standard of Care 2 states, Missouri and New York, have adopted
such a policy for decisions about artificial nutrition and hydration. They have statutes
requiring "clear and convincing" evidence that an incompetent patient would not
have wanted tube feeding.
The assumptions underlying such laws are that tube feeding is a life-sustaining treatment
and that the state has an interest in protecting life.
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Such laws are clearly applicable to patients like Cruzan, who was in a persistent
vegetative state, and who could be maintained by a feeding tube indefinitely. The
relevance of the laws to patients with advanced dementia, a condition in which
medical intervention offers little chance of prolonging life, is highly questionable.
As Lo and Steinbrook have pointed out, "It would be irrational to interpret the Cruzan ruling
as requiring that futile treatment be administered to incompetent patients merely because
they had not given clear and convincing evidence of refusal."
Regulations governing nursing homes are another potential barrier to the
implementation of a new standard of care.
Federal regulations require nursing homes to ensure that their residents have
"acceptable parameters of nutritional status, such as body weight and protein levels,
unless the resident's clinical condition demonstrates that this is not possible."
Physicians should take the initiative in promoting hand feeding for rec PO and allow state
legislatures and nursing home regulators to follow their lead.
SLIDE 19 - Question & Answer Period
EOL Resources List available at www.asha.org
Model best practice EOL programs: Life Care Center of Sarasota, FL 2002, Butterflies are
Free Program to provide comfort and dignity - Nursing Homes Magazine 11/2005
Kindred’s policies – Hospitals are facility specific
- NC are uniform nationally and all are available on Knect
- Terminal Illness POL 601-07
- Quality of Life POL 601
- Advance Directives POL 601-03
- Palliative Care
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