HOSPICE PALLIATIVE CARE

SYMPTOM CONTROL/ MANAGEMENT

KEY PRINCIPLES OF SYMPTOM MANAGEMENT

First, the preferred choice of the patient

Second, open communication involving not only patients and family members but also include all relevant health professionals who will facilitate informed decision making.
Third, listen to patients own story (past & present life experiences) will assist the professional to understand the impact of symptoms from the patients perspective.

KEY PRINCIPLES OF SYMPTOM MANAGEMENT

Impact of physical or psychological symptom manifests in a degree suffering, however, the severity of unrelieved symptoms is not necessarily directly related to suffering. Suffering more concerned with a sense of hopelessness and futility.

Suffering can be exacerbated by the disruption of personal identity (Kissane 2000).

KEY PRINCIPLES OF SYMPTOM MANAGEMENT

Health professionals find it less traumatic to focus on occurrence of symptoms that the experience of the individual patient (Aranda 2003). Look on the patient as an individual, caregivers can create an environment that facilitate inner healing, thus reducing suffering (Kearney, 2000).

KEY PRINCIPLES OF SYMPTOM MANAGEMENT

Symptom management in palliative care is much more than using evidence-based interventions; involves fostering hope and showing by our actions and words that we consider patients to be worthwhile even if they themselves do not (Regnard & Kindlen, 2002).

KEY PRINCIPLES OF SYMPTOM MANAGEMENT

Achieving this involves a degree of giving oneself in facilitating a therapeutic relationship with the patient (Kabel & Roberts 2003, Ramfelt et al 2002).

 Symptoms are multidimensional = adopt a multiprofessional approach = Use interdisciplinary therapeutic model encompassing all dimEnsions of care. Allows members to share information through discussion and working together to formulate goals.

 TAKE NOTE: one must be cautious when discussing symptom incidence and prevalence data because patient cohorts, symptom checklists and study methodologies differ. Core Symptoms related to Hospice admissions: Fatigue, Pain, Dyspnea, and Constipation.

THE PROCESS OF SYMPTOM MANAGEMENT

The Five Main Principles: EEMMA

1. 2. 3. 4. 5. Evaluation Explanation Management Monitoring Attention to Detail

EVALUATION
Establish cause of symptoms Effectiveness of interventions already implemented Physical examination Because of complexities, determine if the symptom is due to: the disease itself the treatment concurrent medical conditions or a combination of all three

EVALUATION
Regardless of the cause, a decision must be taken as to whether the symptom is reversible, treatable or a terminal event for the patient. A comprehensive explanation of the management plan should be given to the patient and family. If the patient is dying, appropriate terminal event symptom management should follow.

EVALUATION
Important: Patient-reported evaluation (mandatory) Assessment instruments Self-reporting instruments (most accurate and often over/ underestimated) Used to supplement professional judgment and aid assessment.

EVALUATION
Important: Issues: - problems in practical application (patient and staff burden) - although comprehensive, are cumbersome and requires time and effort from both patient and health professional. Benefit of using this tool must outweigh the burden of the patient.

EVALUATION
Important: Recommendations: - the simpler and briefer the tool, the more applicable. - Examples: Verbal Rating Scales and Visual Analogue Scale

EVALUATION
A plethora of general and disease-specific instruments exists, but what is important is that practitioners should choose a measurement tool that best suit the patient and measure the dimension of the symptom that is being assessed.

EXPLANATION
Explanation about the care and treatment options is vital to the delivery of effective care and empowers patients and caretakers to be involved as equal partners in the decision-making process. Information about the disease process and significance of symptoms should be provided to patients when they need it, and not at a time convenient for the caretakers.

EXPLANATION
Information should be provided in a sensitive manner. Poor communication skills in relation to information giving can have a detrimental effect on patient outcomes.

MANAGEMENT
Identify the cause and determine what is reversible or treatable Health professionals should work in partnership with the patient. Patients priorities must be considered, and realistic goals set in conjunction with the patient and then documented in the management plan..

MANAGEMENT
Treatment interventions should be tailored to meet the needs of the patient. Team cohesiveness is crucial to achieving successful outcomes. In order to achieve cohesiveness and be efficient, it may be useful for the interdisciplinary team to incorporate elements of collaborative practice.

MONITORING
Will not only determine the efficacy of interventions, but also facilitate regular reassessment of the severity of the symptoms and impact on the patient.

Outcomes should be discussed.

Have a contingency plan; this can have the effect of empowering the patient and again, limiting any time-wasting.

ATTENTION TO DETAIL
If done erroneously - will have significant consequences for the patient.
Throughout the process of symptom management, any missing detail by the health professionals can have significant consequences.

ATTENTION TO DETAIL
Crucial time can be wasted:

by not actively listening to the patient at the initial assessment stage by prescribing but not ascertaining the practical availability of medications and assessing side effects by failing to ask the right questions to elicit the correct information when monitoring interventions.

Key Points:
Meticulous assessment and multiprofessional input will increase the chances of getting it right first time. Involve the patient in decision-making partnership by exploring the symptom experience together.

Never give up hope or underestimate the effect that showing that you truly care about the patient will have on treatment outcomes.

THE SYMPTOMS

Causes
An increase in the respiratory effort required to overcome a certain load (often seen in obstructive or

restrictive lung disease, or pleural effusion) An increase in the proportion of respiratory muscle needed to maintain a normal workload (as demonstrated with neuromuscular weakness or cachexia) An increase in ventilatory requirements (as seen in hyperemia, hypercapnia, metabolic acidosis, or anemia). Patients may also experience a magnification of the intensity of dyspnea due to cultural background, surrounding environment, previous life experiences, and psychological or spiritual distress

Assessment of Dyspnea
Onset of symptom (acute vs chronic) Frequency (hourly, daily, a few times per

week, only when walking, etc) Severity (currently, at its least, and at its worst, using an appropriate scale such as the Visual Analog Scale (VAS) or Borg Any associated symptoms (eg, cough, dizziness

Assessment of Dyspnea
Exacerbating or alleviating factors (both

pharmacologic and nonpharmacologic) Impact on mood, activities of daily life, ability to sleep and eat Meaning of symptom Concerns about specific therapeutic interventions (ie, opioid analgesics and potential for substance abuse or respiratory depression)

Assessment of Dyspnea
Past and current treatments (including

primary treatments for malignancy, over-thecounter medications, herbal supplements, etc) as well as dosing schedule, patient adherence, and side effects

BREATHLESSNESS (DYSPNEA)
Management
Non Pharmacological: All communication should be clear. Any handling should be fully explained and carried out in a slow efficient manner, allowing for a rest between each stage of the procedure. Verbal responses should be limited. Use of close-ended questions be encouraged.

BREATHLESSNESS (DYSPNEA)
Management
Non Pharmacological: Platitudes should not be used, rather the distress that the patient is experiencing should be acknowledged. A fan reduces the sensation of breathlessness by affecting nerve receptors in the trigeminsl nerve distribution. Restful night sleep is of great importance.

BREATHLESSNESS (DYSPNEA)
Management
Non Pharmacological: Patient education in coping techniques. Breathing techniques and relaxation training. Aromatherapy. Therapeutic hypnotherapy. Acupuncture. Oxygen therapy Occupational therapy.

BREATHLESSNESS (DYSPNEA)
Management
Non Pharmacological: Agree realistic goals with patient. Positioning in bed Pacing activities that will be more strenuous using bronchodilator before strenuous activities. Pursed lip breathing Cool, smoke-free, dust-free environment.

BREATHLESSNESS (DYSPNEA)
Management
Non Pharmacological: Aids wheelchairs, commodes, portable oxygen etc for walking Relaxation, music and other therapies

BREATHLESSNESS (DYSPNEA)
Management
Pharmacological: Bronchodilators Steroids Nebulized Furosemide Cannabinoids Opiods (Morphine) Sedation Psychostimulants

BREATHLESSNESS (DYSPNEA)
Monitoring and Attention to Details
- Regular contact with the patient, including assessment of physical status, will facilitate monitoring of the symptoms.

COUGH
Contributing factors include immobility, aspiration, poor cough reflex and progressive weakness of the intercostals and diaphragmatic muscles. Caused by mechanical and/or chemical stimulation

COUGH
Management
Non Pharmacological: Proper coughing techniques Proper positioning Postural drainage Steam inhalation

COUGH
Management
Pharmacological, wet or productive cough: Nebulized saline Antibiotics Bronchodilators Expectorants Mucolytics

COUGH
Management
Pharmacological, dry cough: Antitussive Nebulized local anesthetics

PAIN
A complex phenomenon An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. If pain is unrelieved, the sufferer can be withdrawn, unable to focus and their whole personality can be changed as their quality of life diminishes.

PAIN
Types of Pain: Physiological Pain Neuropathic Pain Somatic Pain Visceral Pain

PAIN
Assessment of Pain:

Measure the sensory, affective and evaluative dimensions of pain experience

McGill Pain Questionnaire Wisconsin Brief Pain Questionnaire Briefer version: Memorial Pain Assessment Chart

PAIN
Assessment of Pain:

SIGN Guidelines offer a useful framework for the evaluation of pain:

Site and number of pains Intensity and severity of pain Radiation of pain Timing Quality of pain

PAIN
Assessment of Pain:

SIGN Guidelines offer a useful framework for the evaluation of pain:

Aggravating and relieving factors Etiology of pain Type of pain Analgesic drug history Presence of any clinically significant psychiatric disorder.

PAIN
Factors Affecting Pain Experience:

Feeling of hopelessness and loss of control

Depression

Psychosocial and spiritual

PAIN MANAGEMENT
Address pain management at 2 levels: 1. Basic level palliative care for uncomplicated pain.

- said to be a core skill that every health care professional , in whatever setting should possess

PAIN MANAGEMENT
Address pain management at 2 levels: 2. Specialist level palliative care - led by clinicians with recognized, specialist palliative medicine training and deals with the more complex problems.

PAIN MANAGEMENT
Given: By Mouth By the Clock

By the Ladder

PAIN MANAGEMENT
Steps:

What to do if you thought that a patient was concealing their pain:

- Establish reasons for reluctance to take opioids. - Try to dispel any misperceptions about opioids and give factual information - Discuss realistically possible side effects and their duration to better prepare the patient and reduce anxiety and fear.

What to do if you thought that a patient was concealing their pain:

- Articles and reading materials could be provided as appropriate to the individual patient.

- Give examples of patients with successful outcomes related to the use of opioids.
- Offer to meet family members to minimize concerns. - Encourage questions at any time.

PAIN MANAGEMENT
Non-Drug Interventions:
Aromatherapy and massage Hypnosis and Relaxation therapy Spiritual Care Good communication and Counselling

GASTROINTESTINAL PROBLEMS
Nausea and Vomiting.
Vomiting is essentially a protective mechanism to rid the body of any ingested poison. Nausea is related to this process, being an unpleasant sensation that will stop further intake of the harmful substance.

GASTROINTESTINAL PROBLEMS
Evaluation / Assessment
A detailed hx, including tumor histology and spread and previous treatment.

Onset of Symptoms
P.E. Evaluation of biochemical status.

GASTROINTESTINAL PROBLEMS
Evaluation / Assessment
Factors that exacerbate or relieve symptoms

Effects on activities of living

Further investigation if necessary (xray if necessary)

Management:
Anti-emetics

GASTROINTESTINAL PROBLEMS
Monitoring:
A key role is played by the nurse in the monitoring of the pattern and nature of the nausea and vomiting. Vomitus should be observed and its characteristics recorded. Amount, color, odor, presence of blood, undigested food or fecal fluid.

Other Problems: Constipation.

Depression

Communication Strategies for Advanced Care Planning Development of a trusting relationship with patients and families is integral to high-quality medical care, especially at end-oflife.

Communication Strategies for Advanced Care Planning

Quality of the patient-clinician relationship trust and rapport can be enhanced by: Encouraging patients to share their concerns and questions using active listening, demonstrating respect, talking in an honest and straightforward manner, being sensitive when delivering difficult news, and maintaining engagement about advanced care planning issues with patient and family throughout the disease process.

Communication Strategies for Advanced Care Planning

Active listening involves the use of open-ended questions and appropriate reflection back about the content of the speakers message. Allow sufficient time for patients to respond and to avoid the tendency to interrupt. Reflecting the main ideas and feelings of the patients statement can be helpful.

Communication Strategies for Advanced Care Planning

Lo and colleagues (1999) remind clinicians that they do not have the sole responsibility for responding to the patients suffering. Referring troubled patients and families to a social worker, psychologist, member of the clergy, or another mental health professional can be helpful and appropriate.

Communication Strategies for Advanced Care Planning

When patients and families becomes emotional, Tulsky (2005) suggest that providers: 1. Acknowledge the affect (This must be...) 2. Identify loss (It must be hard...) 3. Legitimize feelings (I think that is normal...) 4. Offer support (I will be here...) 5. Explore (What....)

Communication Strategies for Advanced Care Planning

Trust and respect are further cultivated when providers communicate in a straight-forward and honest, yet sensitive, manner. Evidence suggest that a vast majority of patients want to be fully informed about their illness and what to expect about their physical condition.

Communication Strategies for Advanced Care Planning

It is important that health care professionals be aware of their nonverbal behaviour and the context in which communication occurs with patients and families.

Rapport-Enhancing Verbal and Nonverbal Communication Strategies. Verbal Strategies Use open-ended questions to explore patient concerns Paraphrase the content of the patients communication using patients own words. Validate patients and family members feelings Summarize broad themes during the interaction. Nonverbal Strategies Give patient undivided attention. Avoid multi tasking. Directly face the [patient at eye level. Avoid distracting mannerisms. Maintain an open posture. Lean forward

Rapport-Enhancing Verbal and Nonverbal Communication Strategies. Verbal Strategies Deliver diagnostic and prognostic information sensitively end with empathy. Assess preferences for receiving medical information. Avoid the use of medical jargon. Nonverbal Strategies Maintain appropriate eye contact. Be sensitive to and aware of cultural differences in non verbal behaviour. Develop self-awareness about ones own nonverbal behaviours and what they communicate to others.

Values Clarification and Discussion of Goals

Assessing the patients understanding of his

or her illness can help the health care professional better understand the patients knowledge base and suggest areas for further patient education. Better to assess how much the patient wants to know about the illness; although most patients want full information about their condition, not all patients do.

Values Clarification and Discussion of Goals

Assessing the patients understanding of his

or her illness can help the health care professional better understand the patients knowledge base and suggest areas for further patient education. Better to assess how much the patient wants to know about the illness; although most patients want full information about their condition, not all patients do.

Values Clarification and Discussion of Goals

Developing an understanding of patient

values, or the principles, ideas or qualities deemed worthwhile, can help clinicians deliver appropriate patient-centered care. Patients can be asked to elaborate on what makes life worthwhile and to explain what the term quality of life mean

Consequences of poor communication

Psychological distress and morbidity Poor adherence to treatment

Reduced quality of life

Dissatisfaction with care Complaints and litigation Potential burnout in healthcare professionals

Concerns of cancer patients

Number and severity of patients concerns

correlates with and predicts Affective disorder Parle et al 1996

High levels of emotional distress

Harrison et al 1994

Concerns of cancer patients

Up to 60% concerns remained undisclosed in

a hospice setting Heaven & Maguire 1997

80% concerns remained undisclosed in an

inpatient setting Farrell et al 2005

Information giving
Patients who feel they are given inadequate information (too little or too much) at time of diagnosis are at greater risk of affective disorders

Fallowfield et al 1990, Butow et al 1995, Schofield et al 2003

Patients who have all their questions answered report cancer having less impact on their lives

than those whose questions remain unanswered Butow et al 2002

Negotiating decision making

Stress

in health professionals

30% senior oncologists had high scores on the Maslach burnout inventory
High emotional exhaustion High depersonalisation Low personal accomplishment

28% had significant levels of distress (General Health Questionnaire, 12)

Lack of training in communication skills associated with burnout and

distress

Ramirez et al 1995 Taylor et al 2005

Barriers to effective communication

Fears Beliefs/attitudes Skills Working environment

NB: Consider barriers from both the health care professionals and patients perspective

Barriers
Fears
Unleashing strong emotions Upsetting patients/relatives

Beliefs
Emotional problems are inevitable Not my role Talking raises expectations Patient will fall apart Will take too long

Patient refusing treatment

Difficult questions Damaging the patient

Barriers
Lack of skills
Assessing knowledge and perceptions Integrating medical and psychosocial modes of enquiry Handling difficult reactions

Working environment
No support or supervision No referral pathway Staff conflict Lack of time Lack of privacy

Maguire, 1999; Booth, et al.,1996; Wilkinson, 1991

Patient Barriers
Fears Of being stigmatised Being judged as ungrateful Of crying/breaking down Of burdening health professional Of causing distress to the health professional

Other reasons
Patient cannot find the right words Does not have command of the language Relevant questions were not asked Patient cues met by distancing
Maguire, 1999; Heaven & Maguire 1998

Facilitative (key) skills Are used to:

Gather patient information

(Identify patients

history/agenda/needs/concerns)
Acknowledge patients agenda/concerns Negotiate decision-making

Facilitative skills (1 Gathering

Information)
Goldberg et al 1993; Wilkinson 1991; Maguire et al 1996: Zimmerman et al 2003;

Open questions Open directive questions Psychological focus Pauses Screening questions

Picking up cues

Acknowledge Clarify Explore

Negotiation Exploration Clarification

Facilitative skills (2 listening

skills)
Goldberg et al 1993; Wilkinson 1991; Maguire et al 1996: Zimmerman et al 2003;

Reflection (acknowledgment)

Empathy Educated guesses

Paraphrasing (acknowledgement and Pauses/silence checking)

Summary

Minimal prompts

Facilitative skills (3info giving

behaviours)
Check what information is

needed
Give information in small

Pause - allow information to sink in Wait for a response BEFORE continuing Check understanding Check impact

chunks
Use clear and simple terms Avoid detail unless requested

Facilitative skills: recent findings

Silence or minimal prompts most likely immediately to precede disclosure Eide H et al 2004 Giving information reduces likelihood of further

disclosure Zimmerman C et al 2003 Polarity of words important: screening questions

Something else more than twice as likely to elicit further concerns as anything else

We miss the cues patients give us

Types of Cues
Psychological symptoms Words/phrases which describe physiological correlates of unpleasant emotional states Words/phrases suggesting vague or undefined

emotions
Verbal hints to hidden concerns Mention of a life event/repeated or emphasised

mention of a neutral event

Mention of a life threatening illness

Non-verbal cues
Clear expression of a negative or

unpleasant emotion (eg. crying)

Hints to hidden emotions (sighing,

silence, frowning, negative body posture)

Importance of cues
Facilitative questions linked to cues increase the probability of further cues and are key to a patientcentred consultation Zimmerman et al 2003 Open questions linked to a cue are 4.5 times more likely to lead to further significant disclosure than unlinked open questions Facilitating the first patient cue appears to be important 20% drop in cues during consultation if first cue is not facilitated Fletcher PhD thesis 2006

Responding to cues shortens consultation times

Cues - will it take more time ?

GP consultations which were cue based were 12.5% shorter than

those in which cues were missed

Levinson et al 2000

In oncology consultations, addressing cues, reduced consultation

times by 10-12%.

Butow et al 2002

We block patients from sharing concerns

Blocking behaviours
Blocking behaviours can:

Inhibit patient disclosure of feelings and concerns

Maguire et al 1996; Wilkinson et al 2008

Blocking behaviours
Physical questions Inappropriate information Premature reassurance Premature advice Normalising Minimising Jollying along Passing the buck Chit chat

Closed questions
Multiple questions Leading questions Defending/justifying

Blocking behaviours
Wilkinson 1991; Wilkinson et al 2008; Maguire et al 1996

Overt blocking - Complete change of topic

Pt I was upset about being ill Int Hows your family

Distancing strategies - more subtle Change of time frame - Are you upset now? Change of person - and was your wife upset? Removal of emotion - How long were you ill for?