Cancer, Distress, and

Compassionate Care September 24, 2014

Regina Franco, NP MSN

Manager of Center for Integrative

Oncology & Survivorship

Cancer Institute, Greenville Health System

Objectives

• By the end of this session, the attendee will understand

the concepts of:

– Compassionate care and cancer care delivery in survivorship

– Distress assessment and management

– Post-traumatic stress and growth, benefit finding

• The attendee will also be able to describe the:

– Value of compassionate care and distress assessment in other

disease management

What I’ll be Discussing

• What is compassionate care and how does a survivorship

program deliver that care?

• How do we assess and assist with distress even if it is not

necessarily associated with a cancer diagnosis?

– what affects a patient’s level of distress

• What is post-traumatic stress(PTS) or growth(PTG)

experienced by a cancer patient?

– when can PTS or PTG occur

– how to help manage PTSD and encourage benefit finding

Compassionate care

– Traumatized by personal

events & global perception of

cancer

– Healthcare is happy if patients

are “cured” but fails to look at

the aftercare side

– Second most traumatic time in

a cancer patients journey

would be upon completion of

treatment

What does it mean for those who have experienced

traumatic events such as a cancer diagnosis?

As Good as New?

“Whatever our wishes, the person who

has come through a cancer experience

is indelibly affected by it. The Humpty

Dumpty idea of ‘as good as new’- a

powerfully appealing notion for cancer

patients- simply does not pertain. For

better and for worse, physically and

emotionally, the experience leaves an

impression. No matter how long we live

cancer patients are survivors- once

wary and relieved, bashful and proud.”

Compassionate care

– Patient centered care- patient has

autonomy

– Patient empowerment- arming

them with knowledge

– Behavior-based interviewing

– Multidisciplinary approach

– Addressing the caregiver

as well as the patient

What is the compassionate care model in a survivorship program?

Addressing and Managing

Distress

Psychological Distress

“Social and emotional needs are as important as medical needs in the

face of a cancer diagnosis.” – Dr. Larry Gluck.

“Emotional distress has been recognized as a critical 6th vital sign

in medical care…routine screening of all patients may allow a fair distribution of

resources and carries potential for long-term cost savings.“ ( Linden)

1

Respiration

Temperature

Pain

Heart Rate

Blood Pressure

Distress

Psychological Distress

• “One third of the cancer

population experiences distress

and may profit from early

psychosocial intervention”

• Distress, in the context of cancer,

has been defined as “a multifactorial

unpleasant emotional experience of

a psychological (cognitive,

behavioral, emotional), social,

and/or spiritual nature that may

interfere with the ability to cope

effectively with cancer, its physical

symptoms, and its treatment”

Distress Social

Financial

Spiritual

Vachon, Mary. "Psychosocial Distress and

Coping After Cancer Treatment."Cancer

Nursing 29.Supplement (2006): 26-31

Distress

• Distress can lead to:

– decreased quality of life

– poor health behaviors

– increased utilization of

medical services

– increased mortality.

– Lower satisfaction with

medical care

• Distress isn't always due to

a cancer diagnosis, could

be due to:

– Financial burdens

– Family dynamic

– Relationship issues

• CoC mandates after 2015:

– Any oncologist must ask if

patient experiences any level of

distress

– This important question must be

asked at least one

– If you ask, you must have a

means of managing that stress

• “Although at least one third of

the cancer populated

experiences distress, only

10% receive any

psychosocial therapy”

(Vachon, 2006)

Survivorship Clinic:

Case Study of AK

• African American female, age 60 at diagnosis

• Stage IIIA breast cancer, long-term diabetic

• Mastectomy, reconstruction planned

• Two rounds of chemotherapy (6 cycles,17 cycles)

• Radiation

• Endocrine Therapy

Clinic Visit Assessment for AK

• Height 5’5”, weight 230 lbs, BMI 38.3

• Dependent on cane, difficulty with ADL

• Right arm and trunk lymphedema

• Fatigue level 9, pain level 4,

distress inventory 44

“ I quit church when I was diagnosed, I stay at home all day, I

don’t want anyone to see me like this”

“Dr. says it will take 4 surgeries to repair my breast. I hate my

appearance! I’m bald, fat, and only have one breast now”

“I am a bother to you all, and I am not worth the time you all

are giving me”

Clinic Interventions for AK

• Nurse navigator consults with NP and Social Worker

• Interdisciplinary visit for crisis intervention and counseling

• Referrals to lymphedema/PT, dietician and social worker,

schedule consultations and follow-up visits

• Dietician individual counseling, diabetic-appropriate diet and

recommends Healthy Weigh Class at CIOS (3 sessions)

• Social worker individual counseling (3)

• Lymphedema/PT provides education on lymph drainage

techniques, skin care, compression garments, therapeutic

exercise (6)

AK Progress after SCP Visit

• Actively participated in group nutrition classes and complying

with nutritional counseling: “ I have been using a calorie

counting book with my daughter to record my food intake”

• Exercise: “ I am using a stationary bike with my daughter”

• Referred to RCP for balance and gait training

• Referred to Brownell Center for evaluation, medication

adjustment

• Poor body image and distress related to public appearance

remain: “ I don’t want to go back to church yet… I don’t want

everyone asking where I’ve been and why I’m bald”

Distress Thermometer

GHS-Distress Inventory

11

Please circle the answer that best applies to each questions based on your feelings over the last week:

1)I feel Sad.

2) I am anxious

3) I worry about being able to pay all of my bills.

4) I feel too tired to do all the things that I need or want to do.

5)I feel isolated.

6) I am having difficulty finding meaning and purpose in my life.

7) I feel distressed by changes in my appearance.

8) The quality of intimacy with my spouse or partner has declined.

9) I have trouble sleeping.

10) I feel a lack of emotional support by my family.

11) My ability to carry out my activities of daily living has been impacted by my cancer diagnosis

(i.e. managing daily schedules, getting to appointments, housekeeping, personal hygiene, caring for children)

12) Since my cancer treatment I feel physical discomfort (If you have not started your cancer treatment or are not

receiving treatment for cancer please circle 0).

Distress management

• Use of multidisciplinary care models is imperative

• Must have a programmatic approach- knowledge of

community support groups and programs within the

survivorship clinic

• Cancer patients who speak to their doctors about their

emotional health have higher rates of psychosocial care

and feel more satisfied with their cancer treatment.(onc

issue)

• Asking the question is biggest thing, must also be able to

provide assistance depending upon their response

Post-Traumatic Stress and

Post-Traumatic Growth

Post-Traumatic Stress

• Post-traumatic stress

disorder (PTSD) is a clinical

anxiety disorder that occurs

following an intensely

threatening, traumatic event

• Symptoms of PTSD have

been found in up to 50% of

cancer patients

• PTSD has been associated

with higher depression rates

and lower quality of life

among cancer patients and

survivors Morrill, E. Forrest, et al “The Interaction of Post-

traumatic Growth and Post-traumatic Stress

Symptoms in Predicting Depressive Symptoms

and Quality of Life." Psycho-Oncology 17.9

(2008): 948-53

PTSD can lead to

Post-Traumatic Growth

• “Distressing or harmful events can lead to negative

outcomes, such as post-traumatic stress symptoms(PTSS),

but they can also lead to positive outcomes, a experience

termed post-traumatic growth”(Morrill,2008)

• Patients can often immediately respond to a cancer

diagnosis with positive reinterpretation which is reflected by

PTG.

– This is a great “teachable moment” for the provider to encourage

positivity throughout cancer treatment.

Post-Traumatic Growth

• First two years imperative to

addressing possibilities of

benefit finding and PTG

because by year five

patients have normalized

• Great opportunity for change

of behavior

• We need a healthcare

system with behavior based

interviewing and skills to

support change behavior

Dimensions of PTG

• Dimensions of PTG include:

– Enhanced personal relationships

– Positive change in life priorities

– Appreciation for life

– Personal strength

– Spirituality

• Growth resulting from a cancer diagnosis, treatment, and

survivorship is not uncommon

• It has been reported that 60 to 95% of cancer survivors

experience post traumatic growth (Morrill, 2008)

PTG in Cancer Patients

• PTS has been linked to QOL and depression, but post-

traumatic growth (PTG) can affect how heavily those variables

magnify PTS( post traumatic stress)

• PTG may even act as a resource to help cope with some of the

stressors experienced by cancer patients • Cancer survivors use positive reinterpretation to reframe their

traumatic experience as a transition, a way to perceive potential

benefits such as :

– Relationships with others

– New possibilities

– Personal strength

– Spiritual change

Morrill, E. Forrest, et al “The Interaction of Post-traumatic

Growth and Post-traumatic Stress Symptoms in

Predicting Depressive Symptoms and Quality of

Life." Psycho-Oncology 17.9 (2008): 948-53

Benefit Finding

• Benefit finding is “the identification of specific benefits from

adversity and PTG as experiencing a significant positive

change as a result of a major life crisis” (Garland, 2007)

• Study done on a heterogeneous group of cancer patients found

that an increase of benefit finding was due to younger age,

higher stage of cancer, and greater perceived threat

• Examples of benefit finding:

– Smoking cessation groups

– Diet and exercise classes

– Participating in research projects

– Music and art therapy

– Medication and mindfulness

Summary

• Second most traumatic time in a cancer patient’s journey is

upon completion of treatment

– Must have a patient centered approach to deliver compassionate care

empowering the patient with a multidisciplinary approach

• Distress has been recognized as the critical 6th vital sign

– Need to have programmatic approach to address the effects of distress

on the physical and emotional health of cancer patients

• Even though up to 50 % of cancer patients experience

symptoms of post-traumatic stress, traumatic events often lead

to post-traumatic growth seen in 60-95% of patients

– Need to have a health care system to support change of behavior

necessary for this to occur

Survivor-Centered Care

is Essential

Education Alone is NOT Enough

– need programs

Need skilled multi-disciplinary team to make the Right Referrals for the

Right Patient

Finally, all of these components optimize a survivors’ ability to

evaluate their own lifestyles better “teachable moment” and to embrace

change behavior

Survivors are more likely to participate in their

own care if they feel we are addressing their

needs

One size does not fit all