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Care of the Terminally Ill
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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