- Provide a summary of Norlander’s Chapter 6, Physical Symptom Management, using the book and/or power points.
- What are your thoughts on the topic of Physical Symptom Management within the palliative care and/or hospice population?
- Provide a summary of Norlander’s Chapter 11, Cultural Sensitivity: Looking through Different Eyes, using the book and/or power points.
- What are your thoughts on the topic of Cultural Sensitivity within the palliative care and/or hospice population?
- Provide a summary of Norlander’s Chapter 13, Ethical Issues, using the book and/or power points.
- What are your thoughts on the topic of Ethical Issues within the palliative care and/or hospice population?
To comfort always
A Nurse’s guide to end of life care
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Chapter 6: Physical symptom management
Common symptoms
Dyspnea
Constipation
Diarrhea
Nausea / Vomiting
Loss of appetite / Weight loss
Anxiety
Fatigue
Depression
Chapter 6: physical symptom management
Medical history assessment
Tell me about your health
What is the history of your illness?
Tell me about your most distressing symptoms
Are you having problems with nausea, constipation, breathlessness, poor appetite or anything else?
What helps these symptoms?
What makes these symptoms worse?
Chapter 6: physical symptom management
Symptom assessment
How symptoms have affected the patient’s activities of daily living and relationships
Assessment questions
Have your symptoms affected your ability to be independent?
Have your symptoms affected your family or loved ones?
Have you experienced changes in your routines because of your symptoms?
Chapter 6: physical symptom management
Dyspnea
Subjective experience
Look at the cause
Common approaches
Diuretics
Oxygen
Opioids
Inhalers / nebulizers
Remedies
Fan / open window
Reposition patient
Chapter 6: physical symptom management
Constipation
Opioid use
Decreased mobility
Decreased appetite
Treatment
Prevention
Laxatives
Dietary
Chapter 6: physical symptom management
Diarrhea
Less common symptom
Treatment
Antidiarrheal medication
Fluid replacement
Dietary interventions
Chapter 6: physical symptom management
Nausea / Vomiting
Caused by a variety of problems
Treatment
Thorough assessment
Does a pattern exist?
Does it occur after certain medications or meals?
Based on underlying cause
Chapter 6: physical symptom management
Loss of appetite / Weight loss
Find out how the patient feels
Is the family more concerned than the patient?
Treatment
Pharmacologic interventions can stimulate appetite
Megestrol (Megace)
Prednisone
Chapter 6: physical symptom management
Anxiety
Multitude of issues can trigger feelings of anxiety
Fear of the future
Fear of pain
Can be seen in several ways
Increased agitation
Increased restlessness
Increased breathlessness / hyperventilation
Profuse sweating
Treatment
Benzodiazepines
Massage / comfort touch
Chapter 6: physical symptom management
Fatigue
Loss of energy
Tiredness
Can suffer from boredom and lack of stimulation because of inactivity
Treatment
Pharmacologic interventions
Help patient and family adapt to the patient’s fluctuating energy level
Encourage patient’s favorite activities
Chapter 6: physical symptom management
Depression
Persistent feelings of hopelessness and helplessness
Express feelings of despair and worthlessness
Linked with pain
Treatment
Pharmacologic interventions
Counseling
Relaxation and guided imagery
Chapter 6: physical symptom management
Guiding patients
Assure patients that their symptoms needs will be addressed
Explain therapies in terms patient and families can understand
Prepare patients and families for what might come next
Listen carefully to what the patient and family say about symptoms
Engage the patient and family in the care plan
To comfort always
A Nurse’s Guide to End of Life Care
Chapter 11: Cultural Sensitivity
As nurses caring for dying patients, we need to acknowledge that our views of death and dying might be different from that of our patients and their families
Chapter 11: Cultural Sensitivity
American medical practices place a high value on the concept of individual patient autonomy and the patient’s right to know what their diagnosis is
Communicate directly with the patient and tell them the diagnosis
Many other cultures value collective decision making or avoiding discussing death
We expect patients to be part of the decision making process, but some cultures rely on providers to make those decisions
Chapter 11: Cultural Sensitivity
For some cultures, discussion about death is considered taboo
Southeast Asian cultures
Belief that talking about death might bring it on
Discussion about death can be insulting to ancestors
Somali cultures
Discussion of dying is considered uncaring and disrespectful
Chapter 11: Cultural Sensitivity
Native Americans
See illness as an imbalance between the heart, mind, body and soul
Rather than looking for pharmaceutical or surgical remedies, they might look instead to a spiritual healer
Chapter 11: Cultural Sensitivity
Others might view our system with mistrust
Because of past or current experiences
United States
Historically provided less access to healthcare for African American communities in comparison with the white population
Chapter 11: Cultural Sensitivity
Understand your own beliefs
Look at your own attitudes, beliefs and practices
A number of cultural self-assessment tools exist that can help you better understand your own beliefs
Chapter 11: Cultural Sensitivity
Questions to ask yourself
“How was death talked about in my family?”
“What kind of death would I prefer?”
“What do I believe causes most deaths?”
“If I were diagnosed with a terminal disease, would I want to be told?”
“What efforts should be made to keep a seriously ill person alive?”
“What do I consider a good death?”
Chapter 11: Cultural Sensitivity
Chinese Immigrants
Choose to avoid death at home
They believe that the ghost of the person who died will inhabit the home
African Americans
Tend to prefer end of life care in an intensive care unit, hospice residence or nursing home so they will not be a burden to their family
Chapter 11: Cultural Sensitivity
Listen to the patients
Honest and active listening
Ask open ended questions
Be patient
Listen to story telling
Acknowledge the patient’s perception to the illness
Pay close attention to nonverbal communication
Facial expression
Eye contact
Touch
Chapter 11: Cultural Sensitivity
Eye contact
Can be a misinterpreted nonverbal signal
European – American society
Accepted practice to make direct eye contact when you look at people
Asian and Native American
Considered disrespectful to look directly at a person you consider a superior
Chapter 11: Cultural Sensitivity
No magical formula exists for understanding various cultures
You can find a great deal of diversity among individuals even in the smallest cultural groups
Beware of stereotyping or making assumptions based on general knowledge of a patient’s culture
Chapter 11: Cultural Sensitivity
Communication suggestions
“I am not familiar with your customs. Please tell me if I ask questions that offend you.”
“Who else would you like to have here while I talk to you?”
“Some people like to know everything about their illness. What would you like?”
“Do you make your own decisions about your care or would you like someone else to? If so, who?”
“How does your illness affect your day-to-day living?”
Chapter 11: Cultural Sensitivity
When using trained interpreters, consider the following
Prepare the interpreter ahead of time that you will be discussing end-of-life issues or using the word dying
Position yourself at eye level with the patient and speak to the patient, not the interpreter
Following the interview, give the interpreter a chance to process the interview, and ask your questions
Chapter 11: Cultural Sensitivity
Communicating with a patient or family without an interpreter
Speak in a low, moderate voice
Do not raise your voice
Use simple words
Use “pain” instead of “discomfort”
Ask direct questions
“Can you tell me about your pain?”
Give instructions in simple language and demonstrate them
Discuss one topic at a time
Chapter 11: Cultural Sensitivity
If you work in a healthcare institution
Look at your policies of your work place
Are trained interpreters available?
Do you have written resources?
Chapter 11: Cultural Sensitivity
Funeral rites in some religions
Religion
Buddhist Family stays with and prepares the body. Death is considered a prelude to existence in another state.
Hindu Cremation should occur within 24 hours. Organ donation is prohibited.
Jewish Burial should occur within 24 hours of the death. The body should not be left unattended.
Muslin Burial should occur before noon on the day of the death. The body should be buried with the head toward Mecca.
Western Christian The funeral industry is relied upon to prepare the body and organize the rituals.
Chapter 11: Cultural Sensitivity
Working with patients and families of different cultural, ethnic and religious backgrounds during the last steps of a journey in life is an art
It’s the art of being aware of diverse needs, the art of listening, and the art of balancing your own culture and the culture of your institution with the culture of the patient and family
To comfort always
A Nurse’s Guide to End of Life Care
Chapter 13: Ethical Issues
Patients and families are faced with difficult choices
Decisions become more difficult when the patient cannot speak for themselves and families are conflicted
Chapter 13: Ethical Issues
Healthcare ethics
Called bioethics or medical ethics
Study of moral obligations of healthcare providers and society in preventing and treating disease and injury and in caring for people with illness and injury
Chapter 13: Ethical Issues
The most common healthcare ethics framework is based on four principles
Beneficence
Non-maleficence
Autonomy
Justice
Chapter 13: Ethical Issues
Beneficence
Obligation to act for another’s benefit
Looking at the benefits and burdens of a particular action or treatment
Non-maleficence
Obligation to “do no harm”
Looking at the burden a treatment or course of action might cause
Is the treatment going to prolong the patient’s dying without increasing quality or comfort
Chapter 13: Ethical Issues
Autonomy
Person’s right to choose independently
The right to choose also means the right to refuse treatment
Justice
Fair and equitable treatment
Broader meaning in looking at the best use of limited resources
Chapter 13: Ethical Issues
You face ethical dilemmas when you encounter conflict or controversy over a treatment or course of action
Conflicts occur when a patient lacks the capacity to make decisions for themselves and does not have an advance directive or has not communicated their wishes to family members or care providers prior to losing capacity
Chapter 13: Ethical Issues
Decision-making capacity
The ability of a patient to understand a proposed course of treatment, including the benefits and burdens, and to communicate treatment preferences or wishes to others
Questions to ask
Can you tell me why your doctor is recommending this treatment?
Can you tell me what the recommended treatment is?
Can you tell me about the benefits and risks of this treatment?
Chapter 13: Ethical Issues
Many of the common dilemmas in end-of-life care for patients and families involve either starting or discontinuing a treatment
Resuscitation
Should CPR be attempted if a patient’s heart stops?
Artificial nutrition and hydration
Should IV hydration or tube feedings be initiated?
Chapter 13: Ethical Issues
Ventilator support
Should a patient be placed on a ventilator?
If on one, should it be discontinued?
Initiation of treatment such as surgery or chemotherapy that might be considered futile or of no benefit to the patient
Chapter 13: Ethical Issues
You also see dilemmas arise over use of medications (opioids or sedatives) to control pain and other symptoms
If you use an ethical framework to address these issues, you need to meet several conditions
Medications are not given to cause death
Must be to relieve pain – intention must be to do good
Good effect must outweigh the bad effect – relief of suffering is more important that a shortened life
Chapter 13: Ethical Issues
Physician-assisted suicide
Physician prescribes lethal dosages of medication that the patient can take
Available only to terminal ill patients who are considered competent to make this choice
Have been evaluated and determined not to have depression
Legal in four states
Oregon
Washington
Montana
Vermont
Chapter 13: Ethical Issues
Euthanasia
Killing of a patient with “merciful intent”
Not legal
Condemned by most ethicists
The Hospice and Palliative Nurse’s Association (HPNA) code of ethics opposes involvement in either physician-assisted suicide or active euthanasia
Chapter 13: Ethical Issues
As a skilled clinician, you have several roles
Have a thorough understanding of the patient’s illness including
Treatment options
Implications of treatment
Usual progression of the course of illness
Chapter 13: Ethical Issues
Questions you should ask when gathering relevant information
Does the patient have decision-making capacity? If not, who is the surrogate decision maker?
Has the patient expressed their wishes prior to losing capacity verbally or in a written advance care directive?
What choices need to be addressed?
Who are the relevant family members or stakeholders in this decision?
Chapter 13: Ethical Issues
Advocate: Making sure wishes are honored
Guiding per values
Guiding patients and families to make decisions that are consistent with their values and beliefs
You can provide the guidance a patient or family might need by reframing the discussion via the concepts of benefit versus burden, harm versus good, respect for autonomy, and consideration of justice
Chapter 13: Ethical Issues
What about a nurse’s personal ethics, beliefs and values?
If your values conflict with the patient’s wishes, step back and separate your own personal values from the situation
Because decisions at the end of life entail moral, ethical and even spiritual values, you might find your own values in conflict with the wishes of the patient, family or the other healthcare providers
You can be in the position of discontinuing treatments, administering medications, or initiating treatments you believe are wrong and harmful
Chapter 13: Ethical Issues
Try to understand the meaning of the illness to the patient and family
Get help from interdisciplinary team to work through issues
Consult your ethics committee
Usually interdisciplinary
Use an ethical framework to discuss and analyze the dilemma
Chapter 13: Ethical Issues
Within many non-European American cultures, the community and family members make decisions rather than the individuals
In some cultures, full disclosure to the patient is considered disrespectful
Chapter 13: Ethical Issues
Ethics in end-of-life care encompass the moral obligation to care for a patient in a way that prevents harm and benefits the patient
As an advocate, ensure that the patient’s wishes are heard, understood, and honored
As a guide, your communication skills are essential in walking patients and families through these difficult decisions
