Palliative Care Learning Activities
Learning Activity 4: Trajectories of dying
Situation: Mr XY 94 years old discharge from hospital with present diagnose of chronic Pressure ulcer on his sacrum and L> heel and commenced on palliative care.
Mr XY requires high care, in his family wife ZY unable to look after him at home plan for discharge under Palliative care at residential aged care.
Medical History: He has a history of # femur, Macular degeneration, osteoarthritis, Doubly incontinence, Advance Dementia.
Think about those older persons who have the re-entry deaths as described earlier in this section.
The end of life trajectories can be described by causes of death in terms of expenditures or function: sudden death, terminal illnesses, organ failure, and frailty. In this case, Mr. XY is categorized in the frailty group described by a slow decline toward death with a lower functional ability (Ballentine, 2018).
Question 1: How would you explain this process to a family member?
The process can be explained to his family by holding compassionate discussions of the patient’s care goals based on the prognosis to allow them to comprehend his situation’s clinical reality. The nurse’s role in supporting the patient and his family through education on what can be expected. The nurse aids addressing their concerns and questions honestly, active listening, and providing guidance and emotional support. This clinical uncertainty discussion will aid in the acceptance and management of any intrinsic uncertainties of living well and dying with frailty. The RN should present clear information on the current and future expectations with sensitivity to minimize distress. Finally, the RN will develop an individualized plan of care based on the different priorities of the patient and his family.
Question 2: How do you explain when their death is likely to happen?
The RN can explain that death will most likely occur due to the surrogate decision maker’s decision to stop or not initiate prolonged or life-saving interventions. The patients with the frailty trajectory usually die from complications related to being entirely dependent on all daily living activities. Thus, the RN’s nursing activities and interventions to perform in this phase are linked to coordination, communication, and repeated assessments and responses to changes in Mr. XY’s status.
Question 3: Do you feel confident and/or competent in this role?
I feel confident and competent in this role as I can provide both comfort and high quality of life for Mr. XY and empathetic family support throughout the frailty trajectory.
Question 4: What are the key attributes, knowledge and skills for someone to have these conversations?
The nurse should possess knowledge of the combination of palliative care and geriatric medicine to engage in active decision-making on starting and changing treatment, control of symptoms and clinical care (Cohen et al., 2018). Essential nursing skills are interpersonal skills and attributes include compassion, kindness, genuineness, and warmth.
Question 5: What is important to consider before having these conversations?
The vital consideration for nurses before having the conversations is the documentation and planning of EOL care when the patient’s recovery is uncertain. The amount of remaining or projected quality of life has significant effects on evaluating and prioritizing interventions. There is a need to identify EOL to allow optimal clinical responses and a sense of control and security despite the changing conditions.
Learning Activity: Bereavement (Palliative Care)
Palliative health care does not end upon the death of the patient. It also comprises offering support to family members to deal with their loss. The bereavement support helps the bereaved persons to adapt to their loss; thus, it is an established component of palliative care (Goebel. et al., 2017).
Question 1: How does your organisation or residential aged care setting recognise issues of grief and loss for families, for staff and /or for fellow residents? Are there any rituals in place? How do you care for yourself and your colleagues in facing the loss of residents or long-term patients?
Our residential aged care setting offers grief and loss services for any staff or residents experiencing a loved one’s death and needs guidance and support to deal with their pain and sorrow. The services include family and individual counseling, support grief groups, and understanding program that caters for the newly bereaved persons. The rituals include memorial services, sending out bereavement anniversary cards, annual candlelight services for remembrance, and program for coping with grief during holidays. From experience, sending bereavement anniversary cards to the close relatives helps in honoring their loss, conveying sympathy, and emotional support. The bereavement care standards recommend that support is matched to risks and needs. Recent research validates that palliative care should embrace generic methodology to provide support to all bereaved families.
Question 2: Provide examples of best practice from the literature to contrast or back up your experiences
Grief is a natural reaction to loss, which affects every aspect of our lives —the physical, mental, emotional, and social state. The responses to grief include anger, guilt, anxiety, and changes in behavior or appetite. When caring for oneself and colleagues after losing residents and long-term patients, It is best not to think of grief as a sequence of stages when facing the loss of resident and long-term patients. Instead, one should think of the process of grieving as a roller coaster — full of highs and lows, ups and downs. Understanding the normalcy of grief offers knowledge that other people have gone through the same healing process. The consistency and timeliness of relationships between colleagues and residents are vital to building trust and rapport in offering post-bereavement that focuses on the specific needs instead of generic needs (Aoun et al., 2017). The palliative care services should invest their efforts in the assessment and support to family caregivers in the pre-bereavement phase and development of the capacity of the community and transfer of bereavement care.
Question 3: How would you explain this process to a family member?
After the patient’s death, the RN should offer condolences to his family and assist with contacting other individuals or family members upon the request of the family. Face-to-face communication with relatives is preferable to holding telephone conversations. The information should be accurate and honest, personalized to meet the family’s needs, and shared in a caring and empathetic manner. In home care, the RN can request the family if it is alright to take out catheters, tubes, jewelry, and other items from the patient, and offer assistance in preparation for transportation to the funeral home. The highest respect and dignity for the deceased should be maintained during the post-mortem care.
Learning Activity : Advance Care Planning
Learning Activity Reading
Widera E, When not to follow an Advance Directive.
An 85-year-old woman with moderate Alzheimer’s disease who enjoys walking in her nursing home’s garden with her walker has fallen and broken her hip. An advance directive signed by the patient states a preference for “Comfort Measures Only,” and specifically states that she does not want to be transferred to the hospital. The physician believes that surgery would provide long-term pain relief and the chance to maintain some mobility.
What do you do? How do you reconcile her previously expressed hypothetical wishes in an Advance Directive with what is now a rather unanticipated scenario?
In a paper published today in JAMA Internal Medicine, Alex Smith, Bernard Lo, and Rebecca Sudore developed a 5-question framework to help physicians and surrogates through the decision making process in time like this. The framework proposes 5 key-questions to untangle these conflicts:
1. Is the clinical situation an emergency?
2. In view of the patient’s values and goals, how likely will the benefits of the intervention outweigh the burdens?
3. How well does the advance directive fit the situation at hand?
4. How much leeway does the patient provide the surrogate for overriding the advance directive?
5. How well does the surrogate represent the patient’s best interests?
So, how do the authors balance her previously expressed wishes with that which her surrogate may think is in her best interests?
Based on the framework, the paper argues that it is ethically appropriate for the physician and daughter to override the patient\’s previously stated wishes in her Advance Directive and transfer her to the hospital for surgery. The situation isn\’t an emergency, the benefits of pain relief and quality of life with surgery likely outweigh the harms, the advance directives are not a perfect fit and they also grant the surrogate leeway, and the surrogate represents the patients best interest well.
Do you agree?
Now consider these questions:
• What are your thoughts on the 5-question framework?
• Do you agree that it could be useful in decision making in unanticipated scenarios? Give a rationale for your thinking / use the literature to explain
• Do you agree that it is ethically appropriate to override advance directives in situations like this? Give a rationale for your thinking / use the literature to expla
Learning Activity : Dying in Place
When residents become increasingly ill, many Residential Aged Care Facilities (RACFs) have policies for ‘Ageing in place’ or for ‘Dying in place’. However this may not always happen and residents are taken to hospital.
Please go into Case World and look at Greta Balodis. Greta is a resident in a RACF and you can follow her story which outlines some important issues. As Greta becomes increasingly unwell, the scenario we are looking at here is the 3am phone call.
0300 hours…
Patient
information MRN:
78012499 Surname:
BALODIS Given names:
Greta Ainija DOB:
22/04/1938 Gender:
Female
• One night at 0300, registered nurse (RN) Elspeth finds Greta agitated and distressed. She is also febrile at 39oC. Greta is not able to tell Elspeth what is wrong: she has reverted back to speaking Latvian and is pointing at the corner of the room. Elspeth has only recently started working at the facility and does not know Greta well so she discusses what is happening with care worker Jordon who is also new.
Elspeth decides Greta needs to go to hospital for review. She is unsure if this is the correct procedure, but calls Greta’s daughter Anne to let her know. Anne becomes upset and angrily tells Elspeth that her mother does not wish to go to hospital and that this is written in her notes.
View the conversation below:
The phone call ends abruptly leaving Anne feeling very concerned for her mother and RN Elspeth unsure of what to do.
Greta remains at Golden Oaks and Elspeth tries to keep her comfortable until she can be reviewed in the morning.
WATCH THE VIDEO FOR CONVERSATION :
How did this make you feel? How do you think that Anne and the RN felt after this conversation?
Consider yourself in the position of the RN alone on night duty:
What would you do now?
What factors will often contribute to moving residents (or patients if they are at home) to hospital (eg, staffing skill mix, family choice)
How can strategies be put in place to avoid this?
References
Aoun, S. M., Rumbold, B., Howting, D., Bolleter, A., Breen, L. J., & van, W. J. P. (October 04, 2017). Bereavement support for family caregivers: The gap between guidelines and practice in palliative care. Plos One, 12, 10.)
Ballentine, J.M. (2018). The five trajectories supporting patients during serious illness. The California State University Institute for Palliative Care.
Cohen-Mansfield, J., Skornick-Bouchbinder, M., & Brill, S. (April 16, 2018). Trajectories of End of Life: A Systematic Review. The Journals of Gerontology: Series B, 73, 4, 564-572.
Goebel, S., Mai, S.S., Gerlach, C. (2017) Family members of deceased palliative care patients receiving bereavement anniversary cards: a survey on the recipient’s reactions and opinions. BMC Palliative Care 16, 26. https://doi.org/10.1186/s12904-017-0199-7
Samar M Aoun, Bruce Rumbold, Denise Howting, Amanda Bolleter, & Lauren J Breen. (January 01, 2017). Bereavement support for family caregivers: The gap between guidelines and practice in palliative care. Plos One, 12, 10.)
Smith, A. K., Lo, B., & Sudore, R. (2013). When previously expressed wishes conflict with best interests. JAMA internal medicine, 173(13), 1241–1245. https://doi.org/10.1001/jamainternmed.2013.6053