WHEN DENIAL COMPLICATES CAREWHEN DENIAL COMPLICATES CARE

DENIAL IN CANCER PATIENTSDENIAL IN CANCER PATIENTS

Raquel Rodríguez QuintanaRaquel Rodríguez QuintanaPsychooncologistPsychooncologist

CASE PRESENTATION 1CASE PRESENTATION 1

•Mrs I, a 50-year-old womanMrs I, a 50-year-old woman

•Married, 1 daughter (24 years old)Married, 1 daughter (24 years old)

•Time off sick (first time since the diagnosis)Time off sick (first time since the diagnosis)

•2012: Breast cancer (Chemo, surgery & Rt)2012: Breast cancer (Chemo, surgery & Rt)

•2013: Tumor progression (Lung, hepatic and bone metastasis)- Chemo2013: Tumor progression (Lung, hepatic and bone metastasis)- Chemo

•2014: Brain metastasis and paraparesis2014: Brain metastasis and paraparesis

•Personality: self-demanding, fighting spirit, anxiety and negative thoughts related to the Personality: self-demanding, fighting spirit, anxiety and negative thoughts related to the experience of loss (functional and health)experience of loss (functional and health)

•Practising CatholicPractising Catholic

•Knows the diagnosis and “1metastasis”, minimizes the meaning and life-threateting information Knows the diagnosis and “1metastasis”, minimizes the meaning and life-threateting information (“Despite the metastasis I can live 3, 5 or 10 years”)(“Despite the metastasis I can live 3, 5 or 10 years”)

•Staff’s impression: poor awareness of limitations (at home), emotional distress associated with Staff’s impression: poor awareness of limitations (at home), emotional distress associated with maladaptative denialmaladaptative denial

CASE PRESENTATION 2CASE PRESENTATION 2

•Mr M, 46-year-old manMr M, 46-year-old man

•Married, 1 son (approx 15 years old)Married, 1 son (approx 15 years old)

•Ex-smoker (20 cigarretes/day)Ex-smoker (20 cigarretes/day)

•12/2013 Lung cancer stage IV (lung, hepatic, and bone metastasis)12/2013 Lung cancer stage IV (lung, hepatic, and bone metastasis)

•Rt and chemoRt and chemo

•02/14 progression (dyspnea and pain)02/14 progression (dyspnea and pain)

•05/03/14 exitus05/03/14 exitus

•First intervention (11/02)First intervention (11/02)

• patient’s report : “I’m ok, I don’t need psychological support” “my wife is always crying and I patient’s report : “I’m ok, I don’t need psychological support” “my wife is always crying and I need her well”. Fighting spiritneed her well”. Fighting spirit

• wife’s evaluation (11/12): anxiety and depressive symptoms (normal reaction) to the bad wife’s evaluation (11/12): anxiety and depressive symptoms (normal reaction) to the bad prognosis (months?), refuse medication (Diazepam, Escitalopram), worried because the prognosis (months?), refuse medication (Diazepam, Escitalopram), worried because the extended family (Andalucia) does not know the diagnosis extended family (Andalucia) does not know the diagnosis

CASE PRESENTATION 2/2CASE PRESENTATION 2/2

• Further interventions (admitted):Further interventions (admitted):

• P:25/02: physical symptoms (dyspnea); increase anxiety and P:25/02: physical symptoms (dyspnea); increase anxiety and distress; seriousness illness; insomnia; ask questions to the doctor. distress; seriousness illness; insomnia; ask questions to the doctor. Receive the visit of extended family (sister)Receive the visit of extended family (sister)

• P:28/02: shocked by the possibility of moving to HJM (Hospital Joan P:28/02: shocked by the possibility of moving to HJM (Hospital Joan March)March)

• P: 04/03: worries related to physical symptoms (suffocation, P: 04/03: worries related to physical symptoms (suffocation, dyspnea and pain); minimizes the negative (less expectoration) and dyspnea and pain); minimizes the negative (less expectoration) and maximizes the positive (be able to take a shower). “I don’t want to maximizes the positive (be able to take a shower). “I don’t want to think the situation won’t get better because it would discourage me think the situation won’t get better because it would discourage me and I need to be positive” and I need to be positive”

• FG: 25/02: time off sick to be with the patient. More support from FG: 25/02: time off sick to be with the patient. More support from the family. Demands help to deal with denial. the family. Demands help to deal with denial.

DEFINITION DEFINITION

• A. Freud (1961, psychoanalytical theory)- pathological because A. Freud (1961, psychoanalytical theory)- pathological because the goal is avoiding the realitythe goal is avoiding the reality

• Cognitive, stress and coping model (1983)Cognitive, stress and coping model (1983)

• Dorpa: mechanism to escape consciously or unconsciously Dorpa: mechanism to escape consciously or unconsciously from painful events or feelingsfrom painful events or feelings

• Horowitz: self- protective functionHorowitz: self- protective function

• ccommon reaction to bad news ommon reaction to bad news

• can be can be useful and adaptative useful and adaptative

• differentiate from AVOIDANCE and SUPPRESSIONdifferentiate from AVOIDANCE and SUPPRESSION

KÜBLER-ROSS MODEL: THE FIVE KÜBLER-ROSS MODEL: THE FIVE STAGES OF GRIEF (1969)STAGES OF GRIEF (1969)

• denialdenial

• angeranger

• bargainingbargaining

• depressiondepression

• acceptanceacceptance

• * not necessarily in * not necessarily in that order that order

PREVALENCE IN CANCER PREVALENCE IN CANCER PATIENTSPATIENTS

• Prevalence Rates varies (authors, definitions, type of illness, stage)Prevalence Rates varies (authors, definitions, type of illness, stage)

• Vos, de Haes (2007):Vos, de Haes (2007):

• 4-47% diagnosis4-47% diagnosis

• 8-70% of impact on the future8-70% of impact on the future

• 8-42% of affective8-42% of affective

• India (Alexander, Dinesh, Vidyasagar, 1993)India (Alexander, Dinesh, Vidyasagar, 1993)

• 1/3 (n=60): unawareness of the diagnosis1/3 (n=60): unawareness of the diagnosis

• London (St Christopher’s Hospice):London (St Christopher’s Hospice):

• 26% supressed awareness of impending death26% supressed awareness of impending death

• 8% demonstrated obvious denial in the last 8 weeks of life8% demonstrated obvious denial in the last 8 weeks of life

• higher percentage in patients who have not taken the step into higher percentage in patients who have not taken the step into hospice carehospice care

ASSESMENT & TYPES ASSESMENT & TYPES

• degree: major/partial/minor (Hackett, 1961)degree: major/partial/minor (Hackett, 1961)

• Levine Denial of Illness Scale (LDIS)Levine Denial of Illness Scale (LDIS)

• Jacobsen and Lowery (1992):Jacobsen and Lowery (1992):

• illnessillness

• impact on the futureimpact on the future

• unrealistic expectations from care unrealistic expectations from care

• need of care (*quick intervention)need of care (*quick intervention)

• feelings related to the illnessfeelings related to the illness

FORMS OF DENIALFORMS OF DENIAL

• cognitive suppression of painful informationcognitive suppression of painful information

• substitution/replacementsubstitution/replacement

• hide/under-report symptoms and importancehide/under-report symptoms and importance

• evasive languageevasive language

• opposite reactions to loss (laugh)opposite reactions to loss (laugh)

• avoid situations or conversationsavoid situations or conversations

• unrealistic thoughts about futureunrealistic thoughts about future

• signs of anxiety (somatic)signs of anxiety (somatic)

• non-adherence to prescribed treatmentnon-adherence to prescribed treatment

• refuse some actions considering them to be unnecessaryrefuse some actions considering them to be unnecessary

FACTORS THAN CONTRIBUTE FACTORS THAN CONTRIBUTE DENIAL:DENIAL:

• lack of information or understanding of the disease condition lack of information or understanding of the disease condition

• traumatic experience of illness in the family traumatic experience of illness in the family

• cultural issues and valuescultural issues and values

• conspiracy of silence in the family (and among health conspiracy of silence in the family (and among health professionals)- “please, don’t tell him…”professionals)- “please, don’t tell him…”

• personal history and beliefspersonal history and beliefs

• coping patterns coping patterns

• in health care professional: anxiety related to the failure of self in health care professional: anxiety related to the failure of self or failure of medicineor failure of medicine

RECOGNIZE THE “AT RISK” RECOGNIZE THE “AT RISK” PATIENTPATIENT

• younger people younger people

• no gender differences no gender differences

• long, successful survivallong, successful survival

• dependent childrendependent children

• high functioninghigh functioning

TYPE: ADAPTATIVETYPE: ADAPTATIVE

• initial and often replaced by integration initial and often replaced by integration (temporal)(temporal)

• physical recovery and compliance with medical physical recovery and compliance with medical treatment must take priority over fears and treatment must take priority over fears and emotional distressemotional distress

• not impacting the patient’s ability and desire to not impacting the patient’s ability and desire to seek and accept helpseek and accept help

• reduces emotional distress and allows time to reduces emotional distress and allows time to absorb the informationabsorb the information

NON-ADAPTATIVE DENIALNON-ADAPTATIVE DENIAL

• refuses to recognize an obvious medical refuses to recognize an obvious medical problem problem

• interferes with daily life and medical therapyinterferes with daily life and medical therapy

• patient does not seek help, delay treatment patient does not seek help, delay treatment or does not adhere to treatmentor does not adhere to treatment

• complicates planning for future and complicates planning for future and transitions to caretransitions to care

CONSEQUENCESCONSEQUENCES

• prevent sb from participating in health care decisionsprevent sb from participating in health care decisions

• inhibit a peaceful dying processinhibit a peaceful dying process

• request for care that is not indicatedrequest for care that is not indicated

• maintaining the use of futile treatments maintaining the use of futile treatments

• prohibit patients and families from reconciling differences, prohibit patients and families from reconciling differences, organizing financial matters, completing advance directives and organizing financial matters, completing advance directives and saying goodbyesaying goodbye

• prevent from sharing end-of-life thoughts and feelings with prevent from sharing end-of-life thoughts and feelings with family and loved ones (isolation)family and loved ones (isolation)

• cause distress for caregivers (family and staff)cause distress for caregivers (family and staff)

HOW CAN WE MANAGE DENIAL?HOW CAN WE MANAGE DENIAL?

• view denial as a personal choiceview denial as a personal choice

• assess denial carefully (how and when it is used?; benefits and risks; usual assess denial carefully (how and when it is used?; benefits and risks; usual coping style; function; significance)coping style; function; significance)

• try to avoid confrontation (often countertherapeutic)try to avoid confrontation (often countertherapeutic)

• use empathy as tool (and validation)use empathy as tool (and validation)

• provide good symptom relief that includes physical, phycosocial and spiritual provide good symptom relief that includes physical, phycosocial and spiritual symptoms that necessitates the inclusion of a interdisciplinary team symptoms that necessitates the inclusion of a interdisciplinary team

• regular intervention with patient and familyregular intervention with patient and family

• communication techniques (Buckman’s six-step protocolcommunication techniques (Buckman’s six-step protocol; ; Balaban’s four step Balaban’s four step approach)approach)

• IT SHOULD BE ADDRESSED DIRECTLY WHEN COMPROMISES PATIENT’S IT SHOULD BE ADDRESSED DIRECTLY WHEN COMPROMISES PATIENT’S SAFETYSAFETY

IMPACT ON STAFFIMPACT ON STAFF

REFERENCESREFERENCES

• Arranz P, Barbero J, Barreto P, Bayés R. Intervención Arranz P, Barbero J, Barreto P, Bayés R. Intervención emocional en cuidados paliativos y protocolos. Barcelona: emocional en cuidados paliativos y protocolos. Barcelona: Ariel Ciencias Médicas; 2003Ariel Ciencias Médicas; 2003

• Rousseau P. Death Denial. J Clin Oncol 2000;18 (23): 3998-9Rousseau P. Death Denial. J Clin Oncol 2000;18 (23): 3998-9

• Siemerink E, Jaspers J, Plukker J, Mulder N, Hospers G. Siemerink E, Jaspers J, Plukker J, Mulder N, Hospers G. Retrospective denial as a coping method. J Clin Psychol Med Retrospective denial as a coping method. J Clin Psychol Med Settings 2011; 18:65-9Settings 2011; 18:65-9

• Onyeka TC. Psychosocial issues in palliative care: a review of Onyeka TC. Psychosocial issues in palliative care: a review of five cases. Indian J Palliat Care 2010; 16:123-8five cases. Indian J Palliat Care 2010; 16:123-8

• Zhang S, Tse D. Denial in Cancer Patients. Zhang S, Tse D. Denial in Cancer Patients. Palliative Medicine Grand RoundPalliative Medicine Grand Round