cancer-related distress & discomfort management education for american indians & alaska...
TRANSCRIPT
Cancer-related Distress & Discomfort
Management Education for American Indians & Alaska
Natives
Presented
March 2010
South Puget Intertribal Planning Agency
Comprehensive Cancer Control Program
Overview Addressing cancer-related
discomfort and distress as a part of healing
Acknowledging Recognizing
Communicating
The Facts
American Indians and Alaska Natives with cancer are at
especially high risk for poor or no pain management.
Pain remains the most persistent and incapacitating symptom of
cancer.
Cancer Discomfort (pain): The Facts
70% with cancer have pain For 60%, the pain continues after treatment
We all know someone who may not call it pain, but is living with discomfort or distress
due to cancer treatment.
Despite estimates that at least 9 out of 10 cancer patients could obtain relief from
distress & discomfort.
Cancer Discomfort & Distress
Distress and Discomfort is different, it is a physical feeling for many of us. It’s okay to ask for relief from
discomfort and distress
It’s NOT a weakness to tell someone about the discomfort in your body. It may be your body telling you
something is wrong.
Cancer Discomfort & Distress
Our Goal Today Is To:... increase your knowledge about distress and
discomfort related to cancer
and ... assist you in becoming an advocate for
yourself, a family member, and others in your community who may be experiencing distress
& discomfort due to cancer.
We are here to discuss what western medical practitioners call “pain” in
relation to cancer.
During this workshop we will call this distress and discomfort.
Cancer Discomfort & Distress
“Pain” may be a word identified by many Native Americans as
historic trauma; sadness or grief related to
injustices that happened in the past.
How does pain differ from distress/discomfort when healing
from cancer?
We are breaking new ground for this training.
We are changing the language we will use to communicate between those with
cancer, their loved ones and the doctors who are caring for someone with cancer.
Cancer Discomfort & Distress
Distress and Discomfort, as we are using it today, is different from the
pain felt by many Native Americans.
Discomfort = physical uneaseDistress = mental or emotional
unease
Cancer Discomfort & Distress
Distress & Discomfort, just like fear, has its place in our lives.
It lets us know something is wrong in our body, mind or
spirit. It is an invitation to see what is out of balance with
our true nature.
Cancer Discomfort & Distress
You don’t necessarily need to know the cause of distress &
discomfort to get treatment for it.
Alerting your caregiver and/or doctor right away about any distress & discomfort you are having makes treatment more
effective.
Cancer Discomfort & Distress
Some challenges are specific to health care professionals
Others are related to the health care systems
And still other challenges are related to patients
Challenges to Discomfort & Distress Relief
As patients we may…
…have reluctance to tell the doctor or others about distress & discomfort.
…have concerns that talking about distress & discomfort may distract the doctor from treating the cancer.
…have reluctance to take pain medicines.
…fear addiction or being thought of as an addict.
…worry about paying for the medicines or other care that may be recommended by the doctor.
Other?
Challenges to Discomfort & Distress Relief
Cancer-related
Discomfort
Not all people with cancer experience cancer-related discomfort
If discomfort is present, it can be caused by a number of things, including things
that have nothing to do with cancer
What is Cancer-related Discomfort?
Alerting your doctor right away about any discomfort you are having makes treatment more
effective
What is Cancer-related Discomfort?
What causes discomfort in people with cancer?
Sometimes the cancer itself causes discomfort: For many people, cancer discomfort comes when a tumor presses on bones, body, organs, or nerves.
Discomfort & distress from the cancer itself depends on:
The type of cancer
The stage (extent) of cancer
A person’s distress and discomfort threshold (tolerance for pain)
One’s emotions and spiritual balance
Sometimes the Cancer treatments: Discomfort can also be an unintended result of
Surgery Radiation
Chemotherapy
Some people continue to experience discomfort and other complications long after
their treatment has ended.
What causes discomfort in people with cancer?
Other conditions related to cancer, such as stiffness from inactivity, muscle spasms
or constipation.
Or discomfort may have nothing to do with the cancer illness or treatment. For
example, pain from co-existing conditions such as arthritis, migraine, diabetes or
heart disease.
What causes discomfort in people with cancer?
Discomfort Characteristics
Discomfort can come in many forms. Some terms your doctor may use
include:Persistent
Breakthrough Phantom
mild, moderate, severe
Discomfort can be acute or chronic
Acute Discomfort
Acute discomfort is severe and lasts a short time.
An example of acute discomfort is what you might experience
after a surgery.
Chronic Discomfort
Chronic discomfort may involve:• persistent pain and • breakthrough pain.
Persistent pain is continuous and may last all day.
Breakthrough Discomfort
Some people with chronic discomfort that is controlled by medicine can have
breakthrough discomfort (may be called breakthrough pain by your
doctor).
Breakthrough distress & discomfort can occur even when you have taken a proper dose of medicine for chronic or persistent distress & discomfort.
Breakthrough discomfort is usually unpredictable, lasts for an average of 30 minutes and is often described as sharp,
shooting and radiating.
It can be triggered by a specific activity or movement; for example, coughing, sneezing
or even something as simple as walking, dressing, changing positions.
It can occur unexpectedly and without warning.
Breakthrough Discomfort
Because breakthrough discomfort comes on so
strongly and unexpectedly, someone with cancer might
start to close oneself off from the world—scared that he or she will be doubled over in excruciating pain with their
next movement.
Breakthrough Discomfort
Mild, Moderate, Severe (and Extreme)
Chronic or persistent discomfort may
range from mild to extreme, and it is present for long periods of time.
If someone has an arm or leg removed by surgery, he or she may still feel discomfort,
pain or other unusual or unpleasant sensations as if they came from the absent
(phantom) limb
To have relief and control of phantom discomfort a person may need multiple methods of treatment including: pain medicine,
physical therapy, antidepressant medicines, and transcutaneous electric nerve
stimulation (TENS)
Phantom Discomfort
Spinal Cord Compression
When a tumor spreads to the spine it can press on the spinal cord and
cause spinal cord compression.
The first sign of the compression can be back discomfort and/or neck pain.
The discomfort can be made worse by coughing, sneezing, or other
movements.
Why is it important to seek treatment for my discomfort?
In particular, unrelieved discomfort can:• limit your ability to work, sleep, exercise or
perform everyday tasks• lower your self-esteem and sense of
purpose • lead to feelings of depression and isolation • place added strain on your relationships • result in more persistent pain down the road • interfere with your cancer care
The Effect of Discomfort on the Body
Discomfort Stress Cortisol (the stress hormone)
Decreased immune system function
Slower, less effective healing
The immune system is what your body uses to attack, or kill, the cancer.
How Is Cancer-Related Discomfort Treated?
Cancer related discomfort is usually treated with medication.
Medications are safe when used properly.
Cancer-Related Discomfort can also be treated with non-drug treatments.
What can I do to control the discomfort?
The good news is that, in almost all cases, persistent background and breakthrough cancer-related
discomfort can be managed through a combination of medications and other therapies:
• Traditional medicines• Gentle exercise,
• Therapeutic massage, • Meditation or visualization
• Use of heating pads or ice packs, • Acupuncture and/or
• Psychosocial support, among others.
Questions and Answers about controlling
discomfort
Challenges to Recognizing Cancer-related Discomfort
TRUE or FALSE: discomfort is an unavoidable part of having cancer.
FALSE
FACT: almost all cancer discomfort, including breakthrough pain, can be managed.
TRUE or FALSE: Discomfort is a sign that the cancer is spreading or has come back (recurrence).
FALSE
FACT: While discomfort can indicate that cancer has spread or that there is nerve damage from
intensive cancer therapies, this is not always the case.
Challenges to Recognizing Cancer-related Discomfort
TRUE or FALSE: talking about pain makes someone seem like a complainer.
FALSE
FACT: Pain should be taken seriously. Trying to grin and bear the pain or ignoring it can be harmful to your health and well being. Those who care for
you will not think you are a complainer.
Challenges to Recognizing Cancer-related Discomfort
TRUE or FALSE: Calling attention to the pain may distract the clinician from
treating their cancer.
FALSE
FACT: Treating your discomfort or distress is an integral part of symptom management
and quality cancer care. Discomfort or distress can often interfere with sleep and
your ability to fight disease.
Challenges to Recognizing Cancer-related Discomfort
TRUE or FALSE: Cancer patients need to avoid taking strong prescription pain medications because they
might become addicted.
FALSE
FACT: As with any medication, there are risks. Addiction is rare when cancer pain medicines are
properly prescribed and taken as directed.
Challenges to Recognizing Cancer-related Discomfort
True or False: needing strong pain medication means they’re gravely ill and close to death.
FALSE
FACT: Taking strong pain medications does not mean that you have a short timeframe or poor prognosis. Many cancer survivors take strong
pain medications for their distress and discomfort which has helped them lead a more
active lifestyle.
Challenges to Recognizing Cancer-related Discomfort
TRUE of FALSE: You should make discomfort or distress control a priority?
TRUE
FACT: Discomfort negatively affects your quality of life.
Unexpected discomfort flares can interfere with daily activities and interrupt cancer-
related treatment schedules.
Challenges to Recognizing Cancer-related Discomfort
TRUE or FALSE: Someone experiencing cancer related distress or discomfort
should suffer in silence.
FALSE
FACT: With proper evaluation and treatment, cancer-related distress and
discomfort—including breakthrough pain—can be successfully managed.
Challenges to Recognizing Cancer-related Discomfort
TRUE or FALSE: When telling others about your discomfort, the earlier, the better.
TRUE
FACT: as physical discomfort becomes more severe, it’s typically more stubborn and
difficult to treat. In other words, untreated discomfort often results in more pain and
suffering.
Challenges to Recognizing Cancer-related Discomfort
Doing nothing about Distress and Discomfort can wreak havoc on your body and quality of life. Over time, heightened discomfort
(pain) responses in your body may:
– Harm the nerves, blood vessels and organs
– Suppress immune function – Result in excessive inflammation – Delay healing
Challenges to Recognizing Cancer-related Discomfort
Cancer-related
Distress
Distress = mental, emotional or spiritual unease
For this training we use the word "distress" to describe unpleasant feelings or emotions that may cause problems for you as you cope with cancer and its treatment.
What is Cancer-related Distress?
Saying that you are distressed can mean that
you feel: sadness
hopelessnessfearful
powerless afraid guilty
anxious fatigued
panicangry
discouraged depressed uncertainty
People who have physical symptoms such as pain, nausea,
or extreme tiredness (fatigue) also are more likely to have
emotional distress.
What is Cancer-related Distress:
Caregivers can also feel distress
What is Cancer-related Discomfort?
Signs and symptoms of Serious Distress:
• feeling overwhelmed to the point of panic
• feeling so sad that you think you cannot go through treatment
• being unusually irritable and angry • feeling unable to cope with pain, fatigue,
and nausea
• poor concentration, "fuzzy thinking," and sudden memory problems
• having a very hard time making decisions about even little things
• feeling despairing and hopeless — wondering if there is any point in going on
• thoughts about cancer and/or death all the time
• trouble getting to sleep or early waking (getting less than 4 hours a night)
Signs and symptoms of Serious Distress:
• trouble eating (a decrease in appetite, or no appetite) for a few weeks
• family conflicts and issues that seem impossible to resolve
• questioning your faith and religious beliefs that once gave you comfort
• feeling worthless and useless
Signs and symptoms of Serious Distress:
Holding negative emotions or feelings inside and not talking about them can
make them grow stronger and last longer.
Releasing feelings can help to relieve stress.
Share your concerns with people you trust.
Solutions for Cancer-related Distress:
Spiritual ResourcesMedicines (prescriptions)Social and Mental Health ServicesComplimentary and Alternative
MedicineTraditional HealerPrayer
Solutions for Cancer-related Distress:
Spiritual Resources
In a time of crisis (like when you or a family member has cancer), many people prefer to talk with a person from their spiritual or religious group.
Some people may find benefit from traditional healing or
complimentary or alternative medicine when facing cancer
related distress.
Solutions for Cancer-related Distress:
Spiritual guidance may help you address any of the following symptoms or concerns:
grief
concerns about death and the afterlife
challenged belief systems
concerns about the meaning or purpose of life
concerns about the relationship with the Creator
guilt
hopelessness
conflict between beliefs and recommended treatment
Medications
Sometimes a drug is needed to reduce distress related to the cancer.
Medicines to treat depression (anti-depressants) or to treat anxiety (anti-anxiety medicines) are options that may reduce distress and help with poor sleep and appetite.
Social Services and Mental Health Services
Mental health services are used to evaluate and treat distress that is moderate to severe. This distress may be caused by other emotional or psychiatric problems the person had before cancer was found.
In many tribes and hospitals, a social worker is available to handle practical, psychosocial, and psychological problems.
Will the distress ever go away?
Gradually, as a person adjusts to or accepts the cancer experience
and allows themselves to become comfortable with their feelings,
many emotional effects will become less intense and happen
less often.
Why is paying attention to distress important?
Paying attention to your feelings, especially uncomfortable feelings, can be hard when
you and others may have wanted and expected to just get on with life.
Yet paying attention to your emotional reactions after treatment has ended is
important for ongoing mental, emotional and physical health.
Assessment: Recognizing,
Acknowledging and Communicating Cancer-related
Distress & Discomfort
Communicating about Discomfort and Distress
Communicating about discomfort or distress to your doctor is key to getting targeted care.
Good distress & discomfort management is an important component of healing from cancer.
Learning to be an advocate for cancer distress & discomfort relief will improve the quality of life and well-being for Native cancer patients.
have knowledge about distress & discomfort management,
who expect pain relief, and who can communicate their distress or
discomfort,
are more likely to get more responsive distress & discomfort management from
their health care providers.
Studies show that patients who:
Journal
We’ll be discussing Discomfort & Distress and provide you with tools to help:
document and communicate distress and discomfort between the
patient, the caregiver and
the doctor.
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Letter to my doctor
Journaling discomfort and distress
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Onset (when it began)
Duration(how long it lasts)
Quality(drawing or other description)
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Location
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Words to describe discomfort
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Discomfort Questionnaire
Intensity (barometer)
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Effects of the Discomfort (how it keeps me from doing what I want to do)
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
My JournalRecognizing & Documenting
Cancer Related Distress & Discomfort
My JournalRecognizing & Documenting
Cancer Related Distress & Discomfort
Distress self-assessment Questionnaire
My JournalRecognizing & Documenting
Cancer Related Distress & Discomfort
Distress Questionnaire
Onset
Duration
My JournalRecognizing & Documenting
Cancer Related Distress & Discomfort
Quality of the distress (drawing or other description)
Variation/Rhythm
What relieves it
What increases distress
My JournalRecognizing & Documenting
Cancer Related Distress & Discomfort
Effects of the Distress
(how it keeps me from doing what I want to do)
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Intensity (barometer)
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
My JournalRecognizing & Documenting Cancer Related Distress &
Discomfort
Traditional Approaches
for Addressing Cancer
Distress
Historic Trauma and Distress
Historical trauma may be causing distress for someone going through
cancer treatment. Many Native People have emotional reactions to hospitals, procedures, doctors, and
general mistrust of western medicine.
Traditional Medicine for Treating and Healing Cancer Discomfort &
Distress –
As Native people, we have a long-history of using Traditional
Healer’s and we respect and value their recommendations in
caring for ourselves
Traditional Medicine for Treating and Healing Cancer Discomfort & Distress–
Traditional medicine often includes herbal remedies, ceremonies and rituals that help
restore a person to balance: mind, body, spirit, environment, family and friends
Traditional medicine, when used along-side Western medicine, can often help achieve a balance in
care that will be of benefit
It’s okay to tell your doctor if you are also seeking care from a Traditional healer. Many people may
be reluctant to discuss the use of traditional medicine due to historical trauma and laws.
Historic Trauma and Distress
Historic trauma affects us all in many ways and can cause distress
Distress of all kinds can influence your healing from cancer.
This workshop will acknowledge that dealing with distress plays a role in
healing.