End of Life Care Survey (EOLCS)

Background:

Quality palliative care is important in ensuring the wellbeing of those suffering with terminal illness. Without sufficient training nurses will struggle to meet the many tough demands of being a palliative caregiver. The End of Life Care Survey (EOLCS) for Nurses is therefore a useful tool for evaluating nurse’s regard for the specific training they receive in this area.

Author of Tool:

Ferrell, B. R., Virani, R., & Grant, M.

Key references:

Ferrell, B. R., Virani, R., & Grant, M. (1999). Analysis of end-of-life content in nursing textbooks. Oncology Nursing Forum, 26(5), 869–876.

Primary use / Purpose:

The End of Life Clinical Nurse Survey (EOLCS) is a 30-item survey. Its purpose is to measure nurses’ attitudes towards, and confidence in, their palliative care skills, their education in this regard, and their relevant demographics.

Instruments used in End of Life (EOL) Care Education

The attached surveys have been developed by the City of Hope researchers for their use in several current research or education projects related to end of life care. As these surveys have been developed by the investigators and are now being used for the first time, there is no reliability or validity data available for them. We are sharing these with you for your use in any way you desire for your own projects. Most of these surveys are intended for descriptive purposes only or as tools for needs assessment, thus additional psychometric testing will likely not be conducted. You may use these in their current form or modify them in any way helpful to your work.

This packet includes:

  • End of Life Curriculum Survey for Nursing Schools
  • End of Life Clinical Nurse Survey
  • End of Life Survey for Home Care/Hospice Agencies
  • End of Life Attitudes Survey for Home Care Nurses and HHAs
  • End of Life Knowledge Assessment for Nurses
  • End of Life Knowledge Assessment for HHA’s
  • Chart Audit Tool
  • Case Analysis Form

City of Hope National Medical Center

 

End of Life Curriculum Survey for Nursing Schools

Description: This survey was designed to assess the needs for improved EOL education in nursing schools. It was used in a survey (n=725) of faculty and deans/chairpersons of nursing schools and staff of the state boards of nursing. Results of this initial survey were published in Nursing Outlook 1999; 47(6).

End of Life Curriculum Survey for Nursing Schools City of Hope National Medical Center

  1. Your role:

               Dean or Chairperson of School of Nursing

               Faculty Member

               Consultant/Staff of Board of Nursing

               Other:                                                  

  1.               Number of years you have been involved in nursing
  2. State                                 
  3. Assess the adequacy of current content in your educational program in the following aspects of end of life (EOL) care:
Not adequate Very adequate
Goals of palliative care 0 1 2 3 4 5 6 7 8 9 10
Quality of life at EOL 0 1 2 3 4 5 6 7 8 9 10
Pain management 0 1 2 3 4 5 6 7 8 9 10
Other symptom management 0 1 2 3 4 5 6 7 8 9 10
Communication with patients/families at EOL 0 1 2 3 4 5 6 7 8 9 10
Role/needs of family caregivers in EOL care 0 1 2 3 4 5 6 7 8 9 10
Death and dying 0 1 2 3 4 5 6 7 8 9 10
Ethical issues in EOL care 0 1 2 3 4 5 6 7 8 9 10
Grief/bereavement 0 1 2 3 4 5 6 7 8 9 10
Overall content on EOL care 0 1 2 3 4 5 6 7 8 9 10
  1. Identify all areas in your curriculum where EOL content is currently taught. If you require more space, use the back of this
Course (e.g. Med-Surg) Content Amount of Time spent on EOL Care Content (e.g. 2 hours)
Example:

Medical-Surgical Nursing

Example:

Pain Management

Example: 1 hour
  1. What resources would be most helpful to assist faculty in improving EOL content in nursing education?
Not helpful Very helpful
Textbooks 0 1 2 3 4 5 6 7 8 9 10
Computer assisted instruction 0 1 2 3 4 5 6 7 8 9 10
Audiovisuals 0 1 2 3 4 5 6 7 8 9 10
Access to speakers, experts 0 1 2 3 4 5 6 7 8 9 10
Access to clinical sites (ie, hospices) 0 1 2 3 4 5 6 7 8 9 10
Lecture guides/outlines on EOL topics 0 1 2 3 4 5 6 7 8 9 10
Case studies 0 1 2 3 4 5 6 7 8 9 10
Standardized curriculum 0 1 2 3 4 5 6 7 8 9 10
Internet Resources 0 1 2 3 4 5 6 7 8 9 10
  1. A) Overall, how important do you believe EOL care content is to basic nursing education?

Not important                                             Very important

0 1 2 3 4 5 6 7 8 9 10

B. How effective do you believe a new graduate of your program would be in caring for a dying patient?

Not effective                                             Very effective

0 1 2 3 4 5 6 7 8 9 10

C. How receptive do you believe your faculty would be to increased EOL care education?

Not receptive                                              Very receptive

0 1 2 3 4 5 6 7 8 9 10

D. As a faculty member, how effective do you feel you are in teaching EOL care content?

Not effective                                             Very effective

0 1 2 3 4 5 6 7 8 9 10

  1. What do you consider to be the greatest barriers to improving content on EOL care?
  2. Please list any other thoughts, comments, or issues regarding the needs of nursing schools in educating nurses about EOL

End of Life Care Clinical Nurse Survey

 

Description: This survey was used to assess the needs of clinical nurses in end of life care. The survey was administered through the attached article which appeared in Nursing 98 and on the City of Hope Pain/Palliative Care Resource Center website. It was also mailed to a random sample of oncology nurses. More than 2,300 nurses completed the survey. Results were published in Oncology Nursing Forum 1999; 26(5).

City of Hope National Medical Center End of Life (EOL) Care Survey

 

  1. How effective are the following aspects of EOL care in your setting?
not at

 

Pain assessment

 

all effective

somewhat

effective

very  

effective

Pain management                           
Other symptom management                           
Psychological support for dying patients                           
Attention to spiritual needs                           
Grief/bereavement support                           
  1. In your setting, how often do dilemmas occur in these aspects of end-of-life care?
not somewhat very
common common common
Preserving patient choice/self-                            
determination

Use of advance directives

 

        

 

        

 

         

Requests for assisted suicide                            
Requests for euthanasia                            
Withholding/withdrawing medically provided
nutrition/hydration                            
Discontinuing life sustaining therapies                            
Legal issues at the end of life                            
Fear of causing death by giving pain                            

medication

Uncertainty about the patient’s                                                                                   prognosis

  1. Compared with 5 years ago, do you believe care of the dying today is:

           worse than 5 years ago              about the same              better than 5 years ago

  1. How much of a barrier are the following factors to providing good end-of-life care in your setting?
not a somewhat severe
barrier of a barrier barrier
Lack of knowledge by health care professionals                          
Health care professionals’ personal discomfort                         

with death

Avoidance of dying patients by health care                                                                                                                                          professionals

Health care professionals fear of causing addiction

by administering pain medications

Patients’ avoidance of death

                

        

      

      

Family members’ avoidance of death                
Cultural factors influencing end-of-life care                         
Patients’/families’ fear of addiction                       
Increased use of unlicensed personnel in care                       
of the dying

The influence of managed care on end-of-life care

 

       

 

       

 

      

Legal restrictions placed on health care professionals
in prescribing pain medications                       
Lack of continuity of care across settings                    _             
  1. Did you care for a dying patient during nursing school? yes                   no
  1. Do you care for dying patients in your current role?           yes               no
  1. What have you used as sources of information about end-of-life care?

      textbooks       journals        internet        seminars/conferences           colleagues

  1. How adequate do you think your basic nursing education program was in preparing you in the following aspects of end-of-life care?
not somewhat very
adequate adequate adequate
Understanding the goals of palliative care                             
Pain management at the end-of-life                             
Other symptom management (i.e. dyspnea, restlessness)                             
Communication with patients/families at end-of-life                             
Role/needs of family caregivers in end-of-life care                             
The care of patients at time of death                     _      
Ethical issues in end-of-life care                            
Grief/bereavement                             
Overall content on end-of-life care                             
  1. Overall, how important do you believe end-of-life care content is to basic nursing education?

      not important                    somewhat important                    very important

not somewhat very
effective effective effective
10. How effective are you in caring for a dying patient?                            
11. How effective are your nursing colleagues in caring for a dying patient?                           
12. How effective are the physicians in your setting in caring for a dying patient?                           
13. How knowledgeable are you about end-of-life care?

      Not knowledgeable          Somewhat knowledgeable          Very knowledgeable

  1. Do you support the legalization of assisted suicide?           yes                  no
  2. Do you support the legalization of euthanasia?           yes                  no
  3. Has any patient requested your help in getting a prescription for medication to use with the primary intention of ending his or her own life?     yes                  no
  4. Approximately how many patients have requested help from such a prescription from you since you began to work as a nurse?                                                      During the past 12 months?                                                   
  5. For approximately how many patients have you helped to obtain such a prescription since you began to work as a nurse? During the past 12 months?                           
  6. Approximately how many patients have requested that you inject them with a lethal dose of medication since you began to work as a nurse? During the past 12 months?               
  7. To how many patients have you given a lethal injection at the patient’s request since you began to work as nurse? During the past 12 months?               
  8. Approximately how many times have you felt obliged by the situation to administer a lethal dose of medicine, without it having been requested by a patient or family member, since beginning to work as a nurse?             During the past 12 months?                           
  9. To how many patients have you given a lethal injection due to the patient’s situation, or without specific request by a patient or family, since beginning to work as a nurse?                 During the past 12 months?                                           
  10. What year were you licensed as a nurse?                                  
  11. What is your age?
  12. Where do you work?

      Hospital                                                        Rehabilitation

      Home health care                                          Ambulatory Care/Outpatient Clinic

      Hospice                                                         Other

  1. In what clinical area do you usually work?

      Medical/Surgical                                           OB/GYN/Nursery

      Critical Care                                                 Pediatrics

      Emergency                                                    Administration

      Oncology                                                      Education

      Operating Room/Postanesthesia                   Othe

  1. What is the highest level of education you’ve completed?

      LPN/LVN                                                         RN

        Diploma

        ADN

        BSN/BS/BA

        MSN/MS/MA

        PhD/EdD/DNS

        Other

  1. What is your title?

      Staff Nurse/Clinical Nurse                           Nurse Director/Executive

      Charge Nurse                                                Clinical Specialist/Nurse Practitioner

      Nurse-Manager                                             Other                                                        

  1. In what state/province do you live?                              
  2. We welcome any thoughts you have on end-of-life

End of Life Survey for Home Care or Hospice Agencies

Description: This survey was designed for use in the Home Care Outreach for Palliative Care Education (HOPE) project (see other HOPE project materials in section XXXV of the City of Hope Pain/Palliative Care Resource Center Index). The survey was completed by 134 home care agencies in California. Results were reported in Cancer Practice March/April 1998; 6(2). A representative of the agency, such as the director or administrator, completes the survey.

End of Life Survey for Home Care/Hospice Agencies City of Hope National Medical Center

 

  1. Does your agency provide services to patients who are terminally ill? Yes        No
  2. Is your agency and/or does your agency provide (Check all that apply):
     Home Care Agency        Hospice        Hospital-based
     Private (for profit)        Private (non-profit)        Government
     Licensed/Certified        Intermittent Visits        Continuous Care
     Other
  1. How many nurses are employed by your agency?
  1. A)  How many home care visits does your agency provide per month?      per year?B) How many patients who are terminally ill does your agency care for per month?      per year
  1. Does your agency have access to an Ethics Committee? Yes        No If yes, what is the make up of the committee?

       Ethics committee w/in your agency         Hospital based ethics committee

       Ethics committee in the community            Ethics committee shared w/ another home care agency What issues does the committee deal with?

  1. Does your agency have policies/guidelines/resources to assist your staff with the following end-of-life issues in home care:

DNR orders               Yes        No                    Hydration/nutrition at end-of-life   Yes    No Advance directives            Yes        No             Terminal dyspnea                           Yes   No Pain management              Yes        No             Death at home                                Yes No Grief/Bereavement            Yes        No             Spiritual care at end-of-life              Yes No Identifying surrogate decision maker for incompetent patients Yes No

  1. Does your agency have specially trained nurses caring for terminally ill patients? Yes        No
  2. Does your agency have palliative care training for your staff? Yes        No If yes, how many hours of training is provided for your staff?

What topics are included?

  1. Would you be interested in an educational curriculum that would assist home care health workers to care/deal with issues of terminally ill patients? Yes No
  2. What topics would be of interest to your agency/staff? (Please rank in order of importance with 1 = most important to 10 = least important)

       Pain Management                                Grief/Bereavement

       Symptom Management                         Legal Aspects of Death/Dying

       Communication w/pt & family              Preparing for death at home

       Spiritual needs                                     Physical care issues (wound care, incontinence, etc.)

       Cultural beliefs re: death/dying             Other (list)

  1. What formats does your agency prefer for staff education?

(Rank in order of preference with 1 = first choice to 10 = last choice)

       Full day conference (8 hour)

       Two half day conferences (8 hour total)

       One half day conference (4 hour)

       Brief (half-hour to 1 hour) inservices held in conjunction w/staff meetings

       Audio cassettes

       Video materials

       Computer instruction

       Newsletter published regularly (e.g. monthly)

       Written materials (ie, case studies or syllabus with test for CEUs)

       Other (describe)

  1. What speakers/professional expertise would be preferred by your agency/staff for education in end-of-life care issues? (Rank in order of importance with 1 = first choice to 8 = last choice).

       Social Worker                                 Clergy

       Ethicist                                            Attorney

       Physician                                        Nurse

       Pharmacist                                      Other (list)

  1. A) Overall, how important is end-of-life care to your agency?

Not at all important                                                                     Very important

0     1     2     3    4     5    6     7     8    9     10

  1. How effectively do you believe your agency provides end-of-life care?

Not at all effectively                                                                     Very effectively

0     1     2     3    4     5    6     7     8    9     10

  1. How receptive do you believe your staff would be to end-of-life care education?

Not at all receptive                                                                       Very receptive

0     1    2     3     4    5     6     7    8     9     10

  1. What is the most important or urgent end-of-life care issue you deal with at your agency?
  2. Please list any other thoughts, comments, or issues regarding the needs of the home care staff in caring for patients and their families at the end-of-life.

End of Life Surveys

Versions for Registered Nurses (RNs) or Licensed Vocational Nurses (LVN) And Home Health Aides

Description: The first survey is designed for use by RNs, LVNs or Home Health Aides (HHA) to determine their ATTITUDES related to end of life care. There are two versions of the KNOWLEDGE survey, one for RNs/LVNs and a separate version for HHAs. There are correct answers for the knowledge survey, thus the answers are listed at the end of each survey. The survey is being used in the Home Care Outreach for Palliative Care Education (HOPE) Project at the City of Hope National Medical Center (see additional materials in section XIII and XXXV in the COHPPRC index related to the HOPE project). The content of the survey reflects the curriculum of the HOPE project.

End of Life Attitudes Survey For RNs, LVNs or HHAs

 

Demographics

  1. Your role:

RN                          

LVN                       

HHA/Aide              

MD                         

SW                          

Other (list)               

  1. Length of time in your profession           years
  2. Length of time in home care           years

 

4.Overall, how effective do you believe you are in the following areas:

not at all 0     1    2     3     4    5     6     7    8     9     10 very effective effective

  1. Pain management
  2. Other symptom management
  3. Communication with terminally ill patients
  4. Communication with family caregivers
  5. Managing the death event at home
  6. Cultural issues in end-of-life care
  7. Overall end-of-life care for the terminally ill

5. Overall, how effective do you believe your agency is in these areas:

not at all 0     1    2     3     4    5     6     7    8     9     10 very effective effective

  1. Pain management
  2. Other symptom management
  3. Communication with terminally ill patients
  4. Communication with family caregivers
  5. Managing the death event at home
  6. Cultural issues in end-of-life care
  7. Overall end-of-life care for the terminally ill

RN End of Life Knowledge Assessment RN/LVN Version

 

  1. The goals of end of life care include all except
  1.        halting the progress of the disease
  2.        relieving emotional and spiritual distress
  3.        enhancing patient/family choices regarding the final stage of life
  1. Which approach to addressing cultural beliefs in end of life care is not appropriate?
  1.        treat all patients in exactly the same way regardless of ethnicity
  2.        be attentive to individual patient needs
  3.        assess patients’ values about end-of-life care
  4.        assess who makes the important health care decisions in the patient’s family
  1. The role of nurses in end-of-life ethical decision-making includes
  1.        gathering information about the patient’s diagnosis and physical condition
  2.         determining the patient’s wishes about living the final stage of life
  3.        communicating information of patient preferences, fears, and concerns to the health care team
  4.        all of the above
  1. The focus of palliative care includes
  1.        control of physical symptoms
  2.        psycho-social support of the patient and family
  3.        attention to spiritual needs
  4.        all of the above
  1. All of the following are true EXCEPT
  1.        the number of terminally ill patients being cared for at home today is increasing
  2.        home care is becoming more high-tech
  3.        more patients are choosing to die in the hospital
  4.        home care patients require more care and support than ten years ago
  1. The most accurate judge of the intensity of the patient’s pain is
  1.        the treating physician
  2.        the primary nurse
  3.        the patient
  4.        the patient’s spouse or family
  1. C has terminal pancreatic cancer but he is concerned that he is becoming addicted to his pain medication. You explain to him that
  1.        he ought not to worry about addiction because it happens to everyone on narcotics
  2.        he is right to worry and you will speak to his physician about changing his medication
  3.        he is not addicted to his medication
  4.        he is terminally ill
  1. Analgesia for chronic pain should be given
  1.        around the clock on a fixed schedule
  2.        only when the patient asks for the medication
  3.        only when the nurse determines that the patient has moderate or severe discomfort
  4.        only when the patient’s family requests pain medication to be given
  1. The recommended route of administration of opioid analgesics to patients with continuous cancer-related pain is
  1.        intravenous
  2.        intramuscular
  3.        oral
  4.        rectal
  1. The most likely explanation for why a patient with pain would request increased doses of pain medication is
  1.        the patient is experiencing increasing pain
  2.        the patient is experiencing increased anxiety or depression
  3.        the patient is trying to become more sedated
  4.        the patient’s requests are related to addiction
  1. Which statement about medically provided hydration and nutrition (such as tube feedings or IV hydration) is untrue?
  1.        it is always appropriate for terminally ill patients
  2.        it may be refused by a competent adult
  3.        it may increase a patient’s suffering (i.e., accumulation of fluid in the patient’s lungs)
  4.        family members may resist discontinuing food and fluids because of the nurturing or comfort associated with these treatments
  1. All of the following are interventions to relieve dyspnea at the end of life except
  1.        administering oxygen
  2.        discontinue oxygen to hasten death
  3.        reduce anxiety
  4.        administering morphine
  1. Fatigue at the end of life can be a result of
  1.        pain
  2.        anemia
  3.        dehydration
  4.        bed rest
  5.        all of the above
  1. Signs and symptoms of progressive delirium to NOT include
  1.        agitation
  2.        withdrawal
  3.        hallucinations
  4.        delusions
  1. Interventions for “terminal agitation” include all the following except
  1.        assessing medications which may be causing agitation
  2.        increasing stimulus
  3.        decreasing stimulus
  4.        administering anxiolytics
  1. All of the following interventions help to relieve nausea EXCEPT
  1.        medicating with an antiemetic only when vomiting is experienced
  2.        avoiding fatty or spicy foods
  3.        medicating with an antiemetic on a round-the-clock basis until nausea subsides
  4.        using relaxation or visual imagery techniques
  1. The most critical step in communication is
  1.        feedback
  2.        speaking
  3.        listening
  4.        use of body language
  1. Communication patterns
  1.        are unique to each relationship and reflect age, gender, and culture
  2.        do not include body movements or facial expressions
  3.        have nothing to do with relationships
  4.        deal only with the person who is speaking
  1. Barriers to communication include
  1.        fear of dying
  2.        isolation from family members
  3.        pre-existing family conflicts
  4.        all of the above
  1. A key component of improving care at the time of death is
  1.        informing and educating family members about signs and symptoms
  2.        since each case is different, treat symptoms only as the symptoms appear
  3.        avoid bothering the family with information about what might happen at the end of life
  4.        minimize family involvement when the patient is dying
  1. Communication occurs on verbal, nonverbal, interpersonal, and interpersonal levels
  1.        true
  2.        false
  1. Signs and symptoms of impending death include all EXCEPT
  1.        pupils reactive to light
  2.        bowel incontinence
  3.        unresponsive to stimulus
  4.        decreased pulse and respiration
  1. It is important to remember
  1.        death is a physical, psychological, social, and spiritual event
  2.        each death is unique
  3.        to allow the family time with the body after the death to say goodbye
  4.        all of the above
  1. Grief
  1.        is an individual process whereby one progresses at his/her own rate
  2.        can be complicated by unresolved family issues related to the dying individual
  3.        is a cumulative experience of multiple losses that have occurred during the illness experience
  4.        all of the above

ANSWERS

  1. a
  2. a
  3. d
  4. d
  5. c
  6. c
  7. c
  8. a
  9. c
  10. a
  11. a
  12. b
  13. e
  14. b
  15. b
  16. a
  17. c
  18. a
  19. d
  20. a
  21. a
  22. a
  23. d
  24. d

Home Health Aides (HHAs)

Version for End of Life Knowledge Assessment 

  1. “Palliative care” means care with the goal that the patient might still be
  1.     True
  2.     False
  3.     Don’t Know
  1. The major goals in caring for the dying are to provide comfort and relieve any symptoms such as pain or
  1.      True
  2.     False
  3.     Don’t Know
  1. There are other ways of relieving pain besides giving medicines such as using heat, cold, or relaxation.
  1.        True
  2.     False
  3.      Don’t Know
  1. You can always judge the patients pain by watching for signs such as grimacing or
  1.      True
  2.     False
  3.     Don’t Know
  1. It is important to continue pushing food and fluids in caring for dying patients even in the final days or weeks to keep them
  1.        True
  2.     False
  3.      Don’t Know
  1. There is a little that can be done to help a patient when he/she becomes short of
  1.      True
  2.     False
  3.     Don’t Know
  1. Listening to what the patient and his/her family says is as important as giving information when caring for a dying
  1.      True
  2.     False
  3.      Don’t Know
  1. It is better to be honest with the family about the patient’s condition and avoid giving false hope that the patient will
  1.        True
  2.     False
  3.       Don’t Know
  1. The family should be less involved with the patient’s care as the death event
  1.     True
  2.     False
  3.     Don’t Know
  1. Some of the signs/symptoms of approaching death are that the patient may experience fatigue/weakness, a lack of desire to eat, an increased need for sleep, additional assistance with personal care, and a tendency to withdraw from family and friends.
  1.     True
  2.     False
  3.     Don’t Know

ANSWERS

  1. b
  2. a
  3. a
  4. b
  5. b
  6. b
  7. a
  8. a
  9. b
  10. a

Chart Audit Tool and Case Analysis Form

The Chart Audit tool is used to conduct audits of current patients or to do a retrospective review of patient charts. It is a useful tool for Quality Improvement Efforts to describe current end of life care. The Case Analysis form is used in the HOPE project to analyze select home care patients and to also identify gaps in end of life care. It is also used as a teaching tool to help nurses analyze current patients during joint visits with the research nurse.

Home Care Outreach for Palliative Care Education (HOPE) Chart Audit Tool

 

Agency Code          

Date of audit                                                                                       Auditor                              

  1. Medical Record#                             
  2. Patient identified as terminally ill? Yes           No
  3. Was the patient aware that he/she was terminal? Yes           No
  4. Was the family aware that the patient was terminal? Yes           No
  5. DNR ordered? Yes           No
  6. Was there an Advanced Directive? Yes           No
  7. Was there a Durable Power of Attorney? Yes           No
  8. Date of death      Location                                                                            
  9. Hospice offered as an alternative? Yes           No
  10. Reason for discharge:       Died on home care and at home

       Died on home care but in the hospital

       Transferred to hospice from home care

       Other, reason                                                                          

  1. Was there interdisciplinary team involvement? Yes           No
c = consult v = actual visit
      Chaplain       c       v       OT       c       v
      CNS       c       v       Pain Specialist       c       v
      HHA       c       v       Pharmacist       c       v
      MD       c       v       PT       c       v
      Music Therapist       c       v       Social Worker       c       v
      Nursing Supervisor       c       v       Volunteer       c       v
      Nutritionist       c       v

      Other                                                                                                         

  1. Were funeral arrangements made in advance? Yes           No
  2. Was the nurse present the day of the death? Yes           No If yes,

      Before the death         At the time of the death         Right after the death

      No, but within 48 hours after the death

  1. Was there a plan for a follow-up phone call and/or card to be sent to the family within a month of the patient’s death? Yes                No

Pain and Symptom Management

  1. Was pain assessed every visit? Yes           No    Additional PRN assessments made on those with uncontrolled pain?     Yes              No

Comments                                                                                                                            

  1. Was pain controlled at a level 3 or less, or, at an acceptable level to the patient?

       Yes          No Meds ordered:

Drug(s)                                    Dose                            Schedule

Other Symptoms Present:

Dyspnea       Yes           No    Controlled?       Yes           No

Comments                                                                                                                            

Fatigue/Weakness        Yes           No    Controlled?       Yes           No

Comments                                                                                                                            

Agitation/Restlessness       Yes           No     Controlled?       Yes           No

Comments                                                                                                                            

Nausea/Vomiting       Yes           No     Controlled?       Yes           No

Comments                                                                                                                            

Nutrition/Hydration       Yes         No     Controlled?       Yes          No

Comments                                                                                                                             

  1. Curative interventions (those beyond comfort measures) still in place? Yes           No

      Chemo                        Radiation                   Parenteral Nutrition

      IV Hydration             Transfusion                Antibiotics


CASE ANALYSIS FORM/PATIENT INTERVIEW/ FAMILY CAREGIVER INTERVIEW – HOPE PROJECT

 

Date of Interview:                                                           

Date of Death:                 

 

  1. Case Presentation
    1. Facts

Age                                          Gender:           Male                   DX                       

Female                  

Treatments (e.g. chemo, radiation)                                                                                  Ethnicity                                                                                                                      Documented Medical Prognosis                                                                                      Nurse’s Estimated Prognosis                                                                                           Prognosis:                                                                                                                    Marital Status:              M S D W        

Primary Caregiver        Yes      No       Relationship                         Religion                                                         

(Prior) Occupation                                                        RN Visits/Wk                          

LVN Visits/Wk                          HHA Visits/Wk                       

II.                 Applying the HOPE Curriculum to Analysis of the Case

A. Overall quality of life issues of end-of-life care

  1. Physical
    1. Positives
    2. Negatives
  2. Psychological
    1. Positives
    2. Negatives
  3. Social
    1. Positives
    2. Negatives
  4. Spiritual
    1. Positives
    2. Negatives

B. Pain Management

    1. Assessment
      1. Patient’s self-report (0-10) (Any intractable pain?)
      2. Description of pain.
      3. Type(s) of pain (bone, nerve, visceral)
    2. Bowel status
      1.             Normal for
      2.             Constipated
      3.             Diarrhea
  1. Medications
    1. Barriers (fear of addiction)
    2. Scheduled meds and route (opioids, NSAIDS, steroids, antidepressants, anticonvulsants)
    3. Breakthrough meds and route
    4. Side effects (n/v, sedation, myoclonus)
    5. Any need to change dosages, meds, routes?
  2. Use of nondrug interventions

C. Symptom Management

Agitation/Restlessness                                                  Side effects of Meds

Altered Mental Status/Delirium                                     Skin Integrity

Anxiety                                                                        Spiritual Distress

Depression                                                                   Vomiting

Dysphagia                                                                    Weakness/Fatigue/Immobility

Dyspnea                                                                       Wounds

Incontinence                                                                Other:

Nausea                                                                         Nutrition/Hydration

 

D. Communication

  1. Does patient understand diagnosis and prognosis? yes            no
  2. What nonverbal behavior did you notice?
  3. What concerns and/or fears did the patient and family have and were they addressed? How?
  4. Did the nurse consider other factors, i.e. culture, religion, family dynamics, roles?
  5. Interdisciplinary team used?
  • Who?
  • What was the impact of the illness on the family system?
  • What strategies or interventions were utilized to assist the patient and family in dealing with the illness?
  1.            Cultural factors assessed (describe)
  2. Impact of illness upon the family:

E. Death Event

  1. Nurse’s personal awareness, beliefs, and fears about death and dying
  2. Signs and symptoms of approaching death
  3. Psychosocial and/or spiritual issues
  4. Patient/family fears
  5. Interventions (including spiritual)
  6. Post-death issues

III.              Evaluation

  1. Overall Strengths of Care
  2. Areas Needing Improvement
  3. Should this Patient Be/Have Been Referred to Hospice?

Why/Why Not?

IV.              Patient/Family Caregiver Interview

 

Pain Management

Patient

  1. Can you describe your pain? What does it feel like?
  2. Can you tell me about your treatments?
    1. drug
    2. nondrug
  1. How distressing is the pain?

0          1          2          3          4          5          6          7          8          9          10

Not at all distressing                                                           Completely distressing

  1. Do you have any concerns about your pain?

Family Caregiver

  1. How would you describe your family member’s pain?
  2. In what ways have you been involved in helping to control the patient’s pain?
  3. What is most distressing to you about the patient’s pain?
  4. Do you have any concerns about what will happen in the future concerning the patient?

Symptom Management

Patient

  1. Can you describe any other symptoms you may be having?
  2. How are these symptoms being treated?
  • Drug
  • Non-drug
  1. Do you have any concerns about these symptoms?
  1. Can you describe any other symptoms you may be having?
  1. How are these symptoms being treated?
  • Drug
  • Non-drug
  1. Do you have any concerns about these symptoms?

Family Caregiver

  1. Can you tell me about any symptoms your family member may have?
  1. In what ways have you been involved in helping control the patient’s symptoms?
  • Drug
  • Non-drug
  1. Do you have any concerns about the symptoms?

Communication

Patient

  1. Do you understand what the nurses have been telling you about your illness and care?
  • If not, how could that be improved?
  • Do you feel comfortable asking for clarification?
  1. Do you feel your needs are being heard and met?
  • What areas could be improved?

Family Caregiver

  1. Have you been able to understand the information given to you by the nurses?
  • If not, how could that be improved?
  • Do you feel comfortable asking for clarification?
  1. Do you feel your needs are being heard and met?
  • What areas could be improved?

Death Event

Patient

  1. Do you have any physical concerns or fears regarding the future?
  1. In what ways do you feel prepared or unprepared for the future?
  1. Do you have any plans for the future that you may not get to accomplish?
  1. Do you have any spiritual concerns or fears regarding the future?
  1. What is holy or sacred to you?

Family Caregivers

  1. Do you have any fears or concerns about the future?
  1. In what ways do you feel prepared or unprepared for the future?
  1. In what ways has your home health nurse helped you prepare for the future?
  1. How does this situation change your plans for the future?
  1. What is holy or sacred to you?
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