cancer-related distress & discomfort management education for american indians & alaska...

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.

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.

“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.

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

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.

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.

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 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.

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.

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.

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.

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.

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).

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.

TRUE or FALSE: talking about pain makes someone seem like a complainer.

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.

TRUE or FALSE: Calling attention to the pain may distract the clinician from

treating their cancer.

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.

TRUE or FALSE: Cancer patients need to avoid taking strong prescription pain medications because they

might become addicted.

FACT: As with any medication, there are risks. Addiction is rare when cancer pain medicines are

properly prescribed and taken as directed.

True or False: needing strong pain medication means they’re gravely ill and close to death.

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.

TRUE of FALSE: You should make discomfort or distress control a priority?

FACT: Discomfort negatively affects your quality of life.

Unexpected discomfort flares can interfere with daily activities and interrupt cancer-

related treatment schedules.

TRUE or FALSE: Someone experiencing cancer related distress or discomfort

should suffer in silence.

FACT: With proper evaluation and treatment, cancer-related distress and

discomfort—including breakthrough pain—can be successfully managed.

TRUE or FALSE: When telling others about your discomfort, the earlier, the better.

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.

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

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

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)

• 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

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

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.

Spiritual guidance may help you address any of the following symptoms or concerns:

concerns about death and the afterlife

challenged belief systems

concerns about the meaning or purpose of life

concerns about the relationship with the Creator

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

Discomfort

Onset (when it began)

Duration(how long it lasts)

Quality(drawing or other description)

Discomfort

Location

Discomfort

Words to describe discomfort

Discomfort

Discomfort Questionnaire

Intensity (barometer)

Discomfort

Effects of the Discomfort (how it keeps me from doing what I want to do)

Discomfort

My JournalRecognizing & Documenting

Cancer Related Distress & Discomfort

Distress self-assessment Questionnaire

Distress Questionnaire

Duration

Quality of the distress (drawing or other description)

Variation/Rhythm

What relieves it

What increases distress

Effects of the Distress

(how it keeps me from doing what I want to do)

Discomfort

Intensity (barometer)

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.

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