HOSPICE PALLIATIVE

CARE

PRELIMS:• Overview of Death and Dying

- Multiple Organ Dysfunction Syndrome

- Incidence of Death- Death as a Natural Process

• Palliative Care• Principle of Palliative Care

For Midterm……………

ESSENTIAL COMPONENTS OF PALLIATIVE CARE1. Symptom Control/Management

2. Effective Communication3. Rehabilitation4. Continuity of Care5. Terminal Care6. Support in Bereavement7. Education8. Research

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 patient’s own story (past & present life experiences) will assist the professional to understand the impact of symptoms from the patient’s 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:

EEMMA1. Evaluation2. Explanation3. Management4. Monitoring5. 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.

EVALUATIONImportant: Patient-reported evaluation

(mandatory) Assessment instruments

Self-reporting instruments (most accurate and often

over/ underestimated)

Used to supplement professional judgment and aid

assessment.

EVALUATIONImportant:

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.

EVALUATIONImportant:

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.

Patient’s 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

CausesAn 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 DyspneaOnset 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 BorgAny associated symptoms (eg, cough, dizziness

Assessment of DyspneaExacerbating or alleviating factors (both pharmacologic and nonpharmacologic)Impact on mood, activities of daily life, ability to sleep and eatMeaning of symptomConcerns about specific therapeutic interventions (ie, opioid analgesics and potential for substance abuse or respiratory depression)

Assessment of DyspneaPast and current treatments (including primary treatments for malignancy, over-the-counter medications, herbal supplements, etc) as well as dosing schedule, patient adherence, and side effects

BREATHLESSNESS (DYSPNEA)

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.

Management

BREATHLESSNESS (DYSPNEA)

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.

Management

BREATHLESSNESS (DYSPNEA)

Non –Pharmacological:Patient education in coping

techniques.Breathing techniques and

relaxation training.Aromatherapy.Therapeutic hypnotherapy.Acupuncture.Oxygen therapyOccupational therapy.

Management

BREATHLESSNESS (DYSPNEA)

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.

Management

BREATHLESSNESS (DYSPNEA)

Non –Pharmacological: Aids wheelchairs, commodes,

portable oxygen etc for walking Relaxation, music and other

therapies

Management

BREATHLESSNESS (DYSPNEA)

Pharmacological:BronchodilatorsSteroidsNebulized FurosemideCannabinoidsOpiods (Morphine)SedationPsychostimulants

Management

BREATHLESSNESS (DYSPNEA)

- Regular contact with the patient, including assessment of physical status, will facilitate monitoring of the symptoms.

Monitoring and Attention to Details

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

Non –Pharmacological: Proper coughing techniques Proper positioning Postural drainage Steam inhalation

Management

COUGH

Pharmacological, wet or productive cough:Nebulized salineAntibioticsBronchodilatorsExpectorantsMucolytics

Management

COUGH

Pharmacological, dry cough:AntitussiveNebulized local anesthetics

Management

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 MANAGEMENTSteps:

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 MANAGEMENTNon-Drug Interventions: Aromatherapy and massage Hypnosis and Relaxation therapy Spiritual Care Good communication and

Counselling

GASTROINTESTINAL PROBLEMSNausea 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

• A detailed hx, including tumor histology and spread and previous treatment.

• Onset of Symptoms

• P.E.

• Evaluation of biochemical status.

Evaluation / Assessment

GASTROINTESTINAL PROBLEMS• Factors that exacerbate or relieve

symptoms

• Effects on activities of living

• Further investigation if necessary (xray if necessary)

Evaluation / Assessment

Management:• Anti-emetics

GASTROINTESTINAL PROBLEMS• 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.

Monitoring:

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-of-life.

Communication Strategies for Advanced Care PlanningQuality 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 PlanningActive listening involves the use of open-ended questions and appropriate reflection back about the content of the speaker’s message.

Allow sufficient time for patients to respond and to avoid the tendency to interrupt.

Reflecting the main ideas and feelings of the patient’s statement can be helpful.

Communication Strategies for Advanced Care PlanningLo and colleagues (1999) remind

clinicians that they “do not have the sole responsibility for responding to the patient’s 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 PlanningWhen 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 PlanningTrust 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 PlanningIt 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 Nonverbal StrategiesUse open-ended questions to explore patient concernsParaphrase the content of the patient’s communication using patient’s own words.Validate patients’ and family members’ feelingsSummarize broad themes during the interaction.

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 Nonverbal StrategiesDeliver diagnostic and prognostic information sensitively end with empathy.Assess preferences for receiving medical information.Avoid the use of medical jargon.

Maintain appropriate eye contact.Be sensitive to and aware of cultural differences in non verbal behaviour.Develop self-awareness about one’s own nonverbal behaviours and what they communicate to others.

Values Clarification and Discussion of Goals Assessing the patient’s

understanding of his or her illness can help the health care professional better understand the patient’s 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 patient’s

understanding of his or her illness can help the health care professional better understand the patient’s 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

Psychological morbidity 9 to 58 % cancer

patients develop an affective disorder requiring intervention

Review article, Massie et al 2004

Oncologists did not identify majority (60 to100%) patients with probable psychiatric morbidity

Communication Link to Patients Psychological Morbidity

3 Main Ways:- Identification of Concerns The Significance of Information

Giving The Importance of Negotiated

Decision Making

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

Importance of negotiated decision-making Associated with increased patient

satisfaction

Third of newly diagnosed cancer patients fail to achieve their desired level of involvement Gattellari et al 2001

Breast cancer patients who shared decision-making had better quality of life three years later Hack et al 2005

Importance of negotiated decision-making

New information may alter a patient’s preference Butow et al 1997

64 percent of oncologists failed to recognise patients’ wishes

Rothenbacher 1997

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

• Patient refusing treatment

• Difficult questions

• Damaging the patient

Beliefs• Emotional problems are

inevitable• Not my role• Talking raises

expectations• Patient will fall apart• Will take too long

Barriers

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

Lack of skills• Assessing knowledge and

perceptions• Integrating medical and

psychosocial modes of

enquiry• Handling difficult reactions

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 patient’s

history/agenda/needs/concerns)

Acknowledge patient’s

agenda/concerns

Negotiate decision-making

Give tailored information

effectively

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

• Negotiation• Exploration• Clarification

Picking up cues

• Acknowledge• Clarify• Explore

Facilitative skills (2– listening skills)Goldberg et al 1993; Wilkinson 1991; Maguire et al 1996: Zimmerman et al 2003;

• Reflection (acknowledgment)

• Paraphrasing (acknowledgement and checking)

• Summary

• Empathy

• Educated guesses

• Pauses/silence

• Minimal prompts

Facilitative skills (3–info giving behaviours)Goldberg et al 1993; Wilkinson 1991; Maguire et al 1996: Zimmerman et al 2003; • Check what information

is needed

• Give information in small chunks

• Use clear and simple terms

• Avoid detail unless requested

• Pause - allow information to sink in

• Wait for a response BEFORE continuing

• Check understanding

• Check impact

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” Heritage J et al 2006

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 patient-centred 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 missedLevinson 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 concernsMaguire et al 1996; Wilkinson et al 2008

Blocking behaviours

• Physical questions• Inappropriate

information• Closed questions• Multiple questions• Leading questions• Defending/justifying

• Premature reassurance

• Premature advice• Normalising• Minimising• Jollying along• Passing the buck• Chit chat

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 “How’s 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?”

Structuring a consultation

Initiating the session

Gathering information

Physical examination

Explanation and planning

Closing the session

Adapted from Silverman, Kurtz and Draper, 2005

Initiating the session• Greet patient, check name• Introduce self and role• Identify reasons for the consultation

Gathering informationExplore patient’s problems / concerns from beginning and identify current concerns:

• Biomedical perspective• Patient’s perspective• Physical, social, spiritual and psychological

Physical examination

Structuring a consultation (1)

Structuring a consultation (2) Explanation and planning

• Provide the correct type and amount of information• Aid accurate recall and understanding• Plan of action: shared decision making

Closing the session• Summary of key concerns/issues/plan• Ask for any further questions• Contact information

Adapted from Silverman, Kurtz and Draper, 2005

Structuring a History/Assessment/Consultation

Initiating the sessionPreparation

Establishing initial rapport (Name & role)Identifying the reasons for the consultation

Gathering information

Exploration of the patient’s problems to discoverPatients perspective Biomedical perspective

physical social spiritual psychological

Physical Examination

Explanation and PlanningProviding the correct type and amount of

informationAiding accurate recall and understanding

Planning: shared decision making

Closing the session

Summary of key concerns/issuesAsk for any further questions

Contact information

Providing Structure

•Making organisation

overt

•Attending to flow

Building the relationship

•Using appropriate non-verbal behaviour

•Developing rapport

•Involving the patient

Adapted f rom Wilkinson 1991 / Silverman, Kurtz and Draper, 2005

Summary Facilitative skills used in context are fundamental

to good practice Blocking behaviours will inhibit patient disclosure Structuring a consultation will help maximise

patient information gathered and aid the tailoring of appropriate information

There are many negative consequences of ineffective communication with patients

Our fears, attitudes, confidence, beliefs and training all impact on our ability to communicate well

Thank you for listening

Any Questions??

Discussing prognosis

Transition from Definitive Care to Palliative Care

Discussing prognosis Identify any concerns that the

patient has for the future

“Am I going to die?”

“It is likely that the cancer will shorten your life”

Be realistic when discussing any proposed treatments

State the difference between a “treatment” and a “cure”

Discussing prognosis Avoid giving specific time

frames

“How long have I got?”

“Well, it may be months rather than years, but it is unlikely to be a few weeks”

If the patient will ultimately die of the disease, offer to explain signs and symptoms of deteriotation but avoid frightening details

“You may notice that you are more short of breath or more easily tired”

Common Pitfalls

• Inadequate time or information

• Failure to elicit the patient’s understanding of the situation and their coping strategy

• Breaking bad news at the doctor’s rather than patient’s pace

Common Pitfalls• Platitudes and false re-

assurance about the future

• Allowing collusion with relatives

• Allowing denial to remain unchallenged when it is causing difficulties for the patient and their relatives

• Removing all hopes

The Transition From

Definitive Care to Palliative Care

The Transition From Definitive Care to Palliative CareNeed to work on patient’s

current concerns:• Control of pain• Control of body functions

(eating, nausea, breathing, anxiety, constipation)

• How to talk with spouses and children about the impact of this changes

The Transition From Definitive Care to Palliative CareNeed to work on patient’s

current concerns:• How to find sources of

personal support• How to avoid side effects of

medicines and fears of addiction

• Life tasks still undone

Principles

Assure the patient that you will not abandon him/her

Explain the patient’s physical and emotional needs to the family

Procedures• Show empathy

- the patient will need to modify his/her goals

- suffer loneliness and fears, need someone to talk to

- help the patient through this difficult process

Procedures• Don’t rush. Stay there

• Familiar with the principles of palliative care and symptom management

• Check to be sure that your patient’s values are honored.

- family visits

- spiritual advisors

- has an advocate for his/her needs

Pitfalls to avoid

Abandoning the patient when your curative therapy reaches its endpoint

Running away from grief

Becoming angry when the brave patient who bore pain nobly deteriorates into dependence

Make sure that the patient knows that you will stay with him/her.

End-of-Life Discussions

End-of-Life Discussions Must take place in both

longstanding and new doctor-patient relationships

Need to know our patients’ preference

To reach plans that feel right to them and seem possible to us.

PRINCIPLES: Begin the discussion when the patient

is feeling healthy

Talk about the issue with the same forthright, and frank attitude

Understand how the patient’s values drive his/her specific requests

PRINCIPLES: 2 sorts of advance directives :

- living wills

- appointment of another person as a legal representative for health care decisions

*Both take effect only when the patient loses decision-making capacity

Policies and laws dictate who can represent a patient who has no decision-making capacity and no advance directives.

PROCEDURES

1. The sequence isa) Bring up the topicb) Ask what ideas and experiences the patient

has about advance directivesc) Ask who else might be available to speak for

the patient if he/she is not able to communicate

d) Make the discussion formal.e) Ask the patient to complete documents.f) Rediscuss it all in the future

*be sure that your patient is cognitively and emotionally capable of making these decisions before beginning this discussion

Most hospitals have policies that ask us to determine resuscitation plans for all our admitted patients –a good starting point

Ask all your patients about their desires for resuscitation even if they’re young.

Even though the patients come to you already filled out some forms about their desires in case of inability to communicate, you still have to have a conversation about end-of-life issues

Be sure that the key family members understand your patient’s wishes.

PITFALLS TO AVOID

Shying away from discussions about dying and death. Hoping that you aren’t on call when the patient dies.

Failing to document end-of-life discussions with the patient.

Leaving key players out of the discussion, chancing explosive conflicts among relatives at big decision points.

Discuss end-of-life issues regardless of the patient’s age, and document your conversation.

4. Being with a dying

patient

Being with a dying patient

PRINCIPLES: We must attempt to ensure the

patient’s comfort, even if at the cost of shortening life somewhat. Dying need not be suffering

Main focus must extend to the family and friends of the dying patient. They need comfort, support, and clear evidence that their loved one is not suffering

PROCEDURES:

Be available. If possible, be on the scene to orchestrate events at the deathbed.

Just be there Practice empathy - ask how the family members

are feeling. Ask to hear about the patient’s life.

The more the grieving relatives talk about the dying person, the calmer and more soothed they will be.

If you knew this patient enough to add to the narrative, you can add your comments, especially the positive ones.

If the patient is a potential organ donor

- confirm with his/her family members

- call the appropriate staff to talk with the family about the process of

donation. If you were present at the death, you might

want to consider some sort of follow-up action, such as sending a card or even attending the funeral.

PITFALLS TO AVOID:

Leaving arrangements and communication with the family to the nurse.

Avoiding anything personal. Talking with the family about biomedical and technical issues.

Missing the chance to hear the family’s feelings and memories.

Sometimes just showing up says more than words

Reference

Field guide to the difficult patient interview, 1999

Communication skill for final MB, 2006 WHO Definition of Palliative Care www.wikipedia.com www.bbc.com