Provincial Clinical Knowledge Topic - extranet.ahsnet.ca · The Care of the Imminently Dying Pathway (see Appendices A-C) was initially developed and piloted by Edmonton Zone Alberta

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Provincial Clinical Knowledge Topic Care of the Imminently Dying (Last Hours to Days of

Life), Adult - All Locations V 1.0

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Care of the Imminently Dying (Last Hours to Days of Life), Adult - All Locations V1.0 Page 2 of 44

Revision History

Version Date of Revision Description of Revision Revised By

1.0 July 12, 2018 Topic Completed See Acknowledgments


Important Information Before You Begin

The recommendations contained in this knowledge topic have been provincially adjudicated and are based on best practice and available evidence. Clinicians applying these recommendations should, in consultation with the patient or Alternate Decision Maker (if the patient lacks capacity), use medical judgment in the context of individual clinical circumstances to direct care. This knowledge topic will be reviewed periodically and updated as best evidence and practice change.

The information in this topic strives to adhere to Institute for Safe Medication Practices (ISMP) safety standards and align with Quality and Safety initiatives and accreditation requirements such as the Required Organizational Practices. Some examples of these initiatives or groups are: Health Quality Council Alberta (HQCA), Choosing Wisely campaign, Safer Healthcare Now campaign. While predicting the likely time of death is challenging, particularly in the non-cancer patient, there is a need to support health care providers in identifying when a patient may only have hours to days of life; this topic focuses on the period after the patient has been identified as Imminently Dying, being in their last hours to days of life. The Care of the Imminently Dying Pathway (see Appendices A-C) was initially developed and piloted by Edmonton Zone Alberta Health Services Continuing Care and Covenant Health Palliative Institute. The C2 Medication and Care Order Set was subject to provincial adjudication by palliative care specialists, and all remaining content of the Clinical Knowledge Topic was initiated and developed, by the Clinical Knowledge and Content Management (CKCM) Care of the Imminently Dying Working Group. It is important to learn from the United Kingdom’s Liverpool Care Pathway (LCP) for the Dying Patient1. Intended as a guidance for the care of persons in their last few hours to two to three days of life, criticisms regarding the application of the LCP led to its abolishment. Issues of concern included: how persons were chosen and placed on the LCP; communication with patients and families; appropriateness of withholding or discontinuing hydration, nutrition and some medications; usage of medications causing undue sedation; and lack of an evidence based approach to care. As such, when utilizing the Care of the Imminently Dying (Last Hours to Days of Life) Pathway, it is essential that the Care of the Imminently Dying Pathway Instructions (Appendix A), Initial Care Needs Assessment (Appendix B) and Nursing Symptom & Care Assessment and Documentation (Appendix C) be utilized concurrently with the C2 Medication and Care Order Set. When utilizing the documents simultaneously, there are various prompts to ensure that there is ongoing communication, review of medications and the care plan, and that the Goals of Care Designation (GCD) Order remains consistent with the patient’s wishes and the prognosis. This approach incorporates the careful considerations of the unintended consequences that ended in the demise of the LCP.


Guidelines This Clinical Knowledge Topic is based on the following guideline:

• National Institute for Health and Care Excellence. NICE guideline [NG31]: Care of Dying Adults in the Last Days of Life. London: National Institute for Health and Care Excellence. [Internet] 2015 [cited 2017 Apr 1]1. Available from: https://www.nice.org.uk/guidance/ng31/evidence/full-guideline-pdf-2240610301

Keywords

• C2 • Imminently dying • End of life care • Actively dying • Last hours to days of life • Terminally ill

Rationale

Death is a natural and normal process which encompasses the final stage of life. Significant trauma or rapid-onset life threatening conditions can lead to sudden death; on the other hand, progressive, incurable diseases, such as cancer, can lead to imminent death. Definitions of imminent death in the literature range from “all adults who are potentially entering the last days of their lives in any setting”2 ; “anyone in the last few days and hours of life”3 ; “any person with prognosis of death within 14 days”4 ; and “any person in the last hours or days of life”5. For the purposes of this Clinical Knowledge Topic, imminently dying is defined as any person in the last hours to days of life, as congruent with the C2 GCD Order within the Alberta Health Services Advance Care Planning and Goals of Care Designation Policy. The quality of life of patients facing a life-limiting condition benefits from the early identification, assessment and treatment of physical, psychosocial and spiritual problems6. Although the likely time of death may be difficult to predict7, recognition of imminent death is necessary in order for the patient and family to prepare and make relevant plans8. As death becomes imminent, caring for and providing support to patients and families is crucial towards this aim of maximizing comfort and quality of life. Predicting the likely time of death is challenging, particularly in non-cancer patient populations9. Validated prognostic tools vary in their subjectivity, complexity and overall clinical utility; at the bedside, clinician-estimated prognosis is based upon a combination of factors including performance status, disease stage, knowledge of disease trajectories and previous clinical experience10. Progressive fatigue, increasing drowsiness, decreased appetite, altered breathing and respiratory congestion may be indicative of imminent death11. Across care settings,

https://www.nice.org.uk/guidance/ng31/evidence/full-guideline-pdf-2240610301

https://extranet.ahsnet.ca/teams/policydocuments/1/clp-advance-care-planning-hcs-38-policy.pdf



interdisciplinary approaches facilitate symptom assessment and management for the imminently dying patient12. Person-centred care encompasses the physical, psychological, social and spiritual needs of the patient and family13. Interdisciplinary team members may experience difficulties in having conversations with patients and families about their needs and care plans14. Effective, honest and sensitive communication is fundamental towards understanding the individual patient’s care goals, and ensuring that patients and families are involved in the decision-making process throughout the course of disease15. In 2013, Canada had a total of 252,358 deaths, of which cancer, heart disease, stroke and chronic lower respiratory diseases were the leading four causes respectively16. In 2014, Alberta had a total of 23,445 deaths17, of which chronic ischemic heart disease, acute myocardial infarction, malignant neoplasms of trachea, bronchus and lung, and other chronic obstructive pulmonary disease were the leading four causes18. In March 2011, Alberta had approximately 410,000 seniors; this is projected to increase to 923,000 seniors by 2031, at which time one in five Albertans will be 65 years of age or older19. Given the rise in aging population and chronic disease incidence in Alberta, the need for palliative care will continue to grow20. To date, Canada has no national guideline, and Alberta has no provincial pathway, on care of the imminently dying adult. Within Alberta, care of the imminently dying occurs across diverse care settings and service delivery models, with variation in clinical practice across Alberta Health Services’ five geographical administrative zones20. There is a need to develop provincial guidance, drawn from best available evidence and practice, in order to inform and support interdisciplinary team members, promote clinical practice standards, and ultimately to enhance the quality of life of imminently dying patients and those important to them.


Goals of Management

To identify the Alternate Decision Maker and those whom the patient would wish to be present during discussions which may include family, by means of the following:

• If the patient has capacity, asking the patient directly • Reviewing all of the patient’s relevant legal documents (i.e. personal directive,

guardianship orders) • Refer to Adult Guardianship and Trusteeship Act

To initiate ongoing communication and shared decision-making between the Most Responsible Health Practitioner (MRHP), appropriate members of the health care team, and the patient and/or Alternate Decision Maker (ADM) with regards to the following:

• The patient’s cognitive status and specific spiritual, psychosocial, cultural and communication needs

• The patient’s preferences for care and documented wishes which may include personal directive, guardianship orders

• The current level of understanding with regards to the patient’s disease, how much information they would like to know, and how involved they would like to be in shared decision-making

• Updated information with regards to the patient’s clinical status and prognosis, any uncertainty and how it will be addressed

• The patient’s goals and wishes, preferred care setting, concerns, fears and anxieties

To consider referrals to appropriate members of the interdisciplinary health care team, as per organizational and site specific procedure, including but not limited to: social work, dietary, occupational therapy, physiotherapy, music therapy, speech language pathology, spiritual care, respiratory therapy and pharmacy.

To implement the Care of the Imminently Dying Pathway when ALL of the following conditions are met:

• The patient is imminently dying (in the last hours to days of life) • The patient has a documented C2 Goals of Care Designation (GCD) Order. Refer to

Advance Care Planning and Goals of Care Designations, All Ages - All Locations Clinical Knowledge Topic on the AHS website.

• A conversation has taken place between the MRHP, appropriate members of the health care team, and the patient and/or ADM with regards to prognosis, wishes, questions and concerns

To apply concurrently ALL of the following components of the Care of the Imminently Dying Pathway:

• Instructions (Appendix A) • Initial Care Needs Assessment (Appendix B) • C2 Medication and Care Orders, with attention to the discontinuation of medications that

are not related to symptom management (Order Set) • Nursing Symptom and Care Assessment and Documentation (Appendix C)

http://www.qp.alberta.ca/documents/Acts/A04P2.pdf


To consider accessing the 24/7 On-Call Provincial Palliative Physician Service (Refer to AHS website https://www.albertahealthservices.ca/info/page14556.aspx) for specialist palliative care physician consult for complex symptom management and support, if not already in place.

Decision Making

Within each scenario, it is understood patients will be involved in all discussions and provide direction related to their care as long as they have capacity. This includes who they wish and do not wish to be involved in discussions and who will speak for them on their behalf when they are no longer able to.

https://www.albertahealthservices.ca/info/page14556.aspx


Decision Making Scenarios

Figure 1: Care of Imminently Dying – R2 Goals of Care Designation (GCD) Order Case Scenario

76 year old male admitted to surgery for incidental finding of an expanding Abdominal Aortic Aneurysm (AAA)

COPD on 3L home oxygen, Hypertension, Type 2 Diabetes MellitusLiving independently in own home

GCD Order R2 prescribed based on discussions related to patient’s wishes & values, understanding of surgical risks and clinically appropriate interventions

including post-op ICU care

Post op day 2, patient develops signs of life threatening acute mesenteric ischemia & renal failure. Prognosis likely hours without immediate intervention

including further surgery that patient would unlikely be able to survive from

Patient cognitively impaired and no longer able to communicate wishes. Discussions with ADM and family reviewing patient’s previously expressed

wishes to continue with interventions that would allow return to previous function, be non-dependent on life support measures & be able to

communicate

RN initiates identification of immediate supports that may be helpful to family and care team utilizing the Care of the Imminently Dying Pathway

Instructions and Initial Care Needs Assessment, recognizing that patient’s life may be just hours

The physician, ADM, family and care team agree the focus of care will now be comfort with maximum symptom support including extubation, discontinuation

of ventilator support and medications being provided for pain, dyspnea and restlessness, as required

The physician writes a C2 GCD Order to communicate to the rest of the healthcare team the care wishes and needs of the patient and family for the remaining hours of his life. ACP/GCD conversations should be documented

Initial Care Needs Assessment, C2 Medication and Care Order Set & Nursing Symptom and Care Assessment and Documentation are initiated

Patient dies 3 hours following conversation with ADM and family


Figure 2: Care of Imminently Dying - M1 GCD Order Case Scenario

66 year old male residing in supportive living with End Stage Renal Disease secondary to Type 2 Diabetes Mellitus being actively treated with peritoneal

dialysis three times a week for the past 4 years

Based on patient’s wishes and appropriate treatment options M1 GCD Order is prescribed

Admitted to hospital with progressive weakness. Investigations reveal electrolyte abnormalities and likely aspiration pneumonia

Within the first six hours of hospital admission patient becomes increasingly confused, less responsive and requires high flow oxygen to manage his

dyspnea all limiting his ability to direct his care

Patient’s wife, his legal ADM, wishes to control his condition as best possible with medical interventions but does not wish transfer to critical care. She is aware her husband may die within hours to a few short days and confirms

these would also be his wishes if he were able to communicate

RN refers to Care of the Imminently Dying Pathway Instructions and Initial Care Needs Assessment to offer supports and

resources to patient’s wife

Within the next 36 hours the patient becomes more responsive and oxygen needs decrease. Patient indicates he would wish to continue current

treatment

The GCD remains M1 and as such the Care of the Imminently Dying Pathway C2 Medication and Care Orders and Nursing

Symptom and Care Assessment and Documentation cannot be implemented


Figure 3: Care of Imminently Dying – C1 GCD Order Case Scenario

83 year old widowed female residing in Facility Living in a Long Term Care setting with a diagnosis of non-small cell (right) lung cancer with metastases

to liver and left femur

Daughter Sally identified as ADM in her Personal Directive

Declining functional status over the past 2 weeks now bedbound, sips of fluids, sleeps 80% of the day with confused periods when awake, total care,

decreased urine output and 2L oxygen

Current GCD Order is C1 based on previous discussions with resident

LPN concerned resident’s length of life may be hours to few daysLPN contacts Most Responsible Health Practitioner (Nurse

Practitioner) to advise of the resident’s change in condition. The LPN then reviews the Care of the Imminently Dying Pathway

Instructions and Initial Care Needs Assessment

Nurse Practitioner contacts resident’s daughter and informs her of the change in her mother’s condition. The daughter indicates her awareness and

wishes her mother be kept comfortable in her current location for the remainder of her Mom’s life. The NP further explains:

“It’s important the rest of the healthcare team is aware your Mom’s health condition has changed and her life may now be very limited to only a few

hours or days. We let the team know this by changing her current C1 GCD Order to C2. We could also start a specialized care plan for her which will

include you and those important to her.”

With the daughter’s consent, Nurse Practitioner contacts LPN and implements the C2 Medication and Care Order Set

LPN completes the Initial Care Needs Assessment and initiates the Nursing Symptom and Care Assessment and Documentation

Resident dies 2 days later


Figure 4: Care of Imminently Dying – C2 GCD Order Case Scenario

49 year old female living at home with End Stage Liver Disease for 3 years. No documented Personal Directive & no previously expressed wishes for

carePatient has been unresponsive to treatments aimed at controlling disease

Now bedbound, requiring total care, minimally responsive, unable to clearly communicate her wishes for care and unable to take food or fluids for 3

days. Assessed by primary care physician to be imminently dying.MRHP (Physician) contacts LPN and implements the C2 Medication and

Care Order Set after discussion with the patient’s family. LPN completes the Initial Care Needs Assessment and initiates the Nursing

Symptom and Care Assessment and Documentation

GCD Order changed from M1 to C2 in discussion with patient’s family. The patient receives focused specialized end of life care for 2 days utilizing the

Care of the Imminently Dying resources

5 days after patient’s change in condition, patient begins to open eyes and attempt to verbally communicate. Hypodermoclysis (HDC) and mouth care

continuePatient’s LOC & capacity to direct care remains impaired and aspiration remains high risk. Family does not wish to provide fluids or foods orally

Patient’s status discussed with family and all agree length of life remains guarded to hours to days

Care guided by the Care of the Imminently Dying C2 Medication and Care Orders and Nursing Symptom and Care Assessment and Documentation

continues

Patient becomes more alert with confused periods; attempts to get out of bed and now taking spoonfuls of soup and coffee family provides.

On Day 7, patient begins speaking & indicates wish “to get better”; requires 2 person assist, is sitting up in chair at bedside. Patient agrees to initiate

treatment to control disease which includes resuming lactulose.

Physician reviews wishes for care and treatment options with patient & with patient’s permission, family present for discussions.

All in agreement that care now be aimed at best trying to control disease and is communicated to the team by changing the GCD Order from C2 to M1 Care of the Imminently Dying Pathway is discontinued including the C2.

Medication and Care Orders and Nursing Symptom and Care Assessment and Documentation


Criteria for Care of the Imminently Dying • The patient is imminently dying (in the last hours to days of life) • The patient has a documented C2 Goals of Care Designation (GCD) Order. Refer to

Advance Care Planning and Goals of Care Designations, All Ages - All Locations Clinical Knowledge Topic on the AHS website.

• A conversation has taken place between the MRHP, appropriate members of the health care team, and the patient and/or ADM with regards to prognosis, wishes, questions and concerns

• Requires ongoing assessment and communication between the patient and/or ADM and the healthcare team


C2 Medication and Care, Adult – All Locations Order Set

Order Set Keywords: C2, Imminently Dying, End of Life, Actively Dying, Dying, Terminally Ill Order Set Requirements: Documented C2 Goals of Care Designation Order. This order set is to be used in conjunction with the Care of the Imminently Dying Pathway Instructions (Appendix A), Initial Care Needs Assessment (Appendix B), and Nursing Symptom and Care Assessment and Documentation (Appendix C) A checked box indicates mandatory orders. However, order may be deleted by stroking the order out and initialing the entry.

Admit Admit to Most Responsible Health Practitioner (MRHP) (in non-acute care settings,

identify MRHP) _________________________

Patient Care Discontinue previously scheduled laboratory and diagnostic investigations Clinical Communication – Cancel any scheduled appointments Clinical Communication – Deactivate ICD (Implantable Cardioverter Defibrillator) as

discussed with Patient/Alternate Decision Maker (ADM) Foley Catheter – Insert PRN, only as needed for urinary retention or patient comfort, with

lidocaine 2% gel lidocaine 2% gel, apply intra-urethral once PRN, for Foley catheter insertion

Notify: MRHP if symptoms are not well managed with current care and medication

Activity Activity as tolerated

Monitoring Discontinue vital signs including oximetry

Diet As tolerated for comfort, as discussed with Patient/ADM for potential aspiration risk.

Regular Diet Other __________ Clinical Communication: May have oral fluids and ice chips for comfort

Hydration/Fluids 0.9% NaCl infusion Hypodermoclysis (HDC) SUBCUTANEOUSLY at _______ mL/hour

Respiratory Care Clinical Communication - Oxygen not required

OR O2 Therapy - Current oxygen needs for patient comfort are ______ L/min via ______


Clinical Communication - Provide fan for dyspnea following organization’s infection control practice guidelines

Medications Review ALL previous medication orders including diabetic management AND discontinue medications that are NOT related to symptom management

Subcutaneous Cannula – Insert PRN only as needed for administration of subcutaneous medications

For comfort artificial saliva gel TOPICALLY to oral mucous membrane QID for dry mouth artificial saliva gel TOPICALLY to oral mucous membrane every 1 hour as needed

(PRN) for dry mouth hydroxypropylmethylcellulose 0.5% eye drops, 1 drop to each eye every 1 hour PRN

while awake for dry eyes macrogol – propylene glycol (SECARIS®) gel INTRANASALLY to both nostrils every 4

hours PRN for dry nares acetaminophen suppository 650 mg RECTALLY every 4 hours PRN for symptomatic

fever or mild discomfort

For pain and/or dyspnea Review patient’s current opioid history opioid (complete medication name, dose, route, frequency):

_____________________________________________________ opioid (complete medication name, dose, route, frequency):

_____________________________________________________

If no history of regular opioid use in the past four weeks: morphine 2.5 mg SUBCUTANEOUSLY every 1 hour PRN for pain and/or dyspnea

Notify MRHP if patient receives more than 3 morphine doses in 8 hours morphine 2.5 mg SUBCUTANEOUSLY every 6 hours for pain and/or dyspnea

OR HYDROmorphone 0.5 mg SUBCUTANEOUSLY every 1 hour PRN for pain and/or

dyspnea. Notify MRHP if patient requires more than 3 HYDROmorphone doses in 8 hours

HYDROmorphone 0.5 mg SUBCUTANEOUSLY every 6 hours for pain and/or dyspnea

For nausea and/or vomiting metoclopramide 10 mg SUBCUTANEOUSLY every 1 hour PRN for nausea and/or

vomiting. Notify MRHP if patient requires more than 3 metoclopramide doses in 8 hours AND/OR

metoclopramide 10 mg SUBCUTANEOUSLY every 6 hours for nausea and/or vomiting OR


haloperidol 1 mg SUBCUTANEOUSLY every 1 hour PRN for nausea and/or vomiting Notify MRHP if patient requires more than 3 haloperidol doses for nausea/vomiting and/or agitation in 8 hours

For agitation haloperidol 1 mg SUBCUTANEOUSLY every 1 hour PRN for agitation. Notify MRHP if

haloperidol is ineffective after 3 consecutive doses or if patient receives more than 3 doses for nausea/vomiting and/or agitation in 8 hours

IF extreme agitation: methotrimeprazine (NOZINAN®) 12.5 mg SUBCUTANEOUSLY every 1 hour PRN for

extreme agitation. Notify MRHP if methotrimeprazine is ineffective after 3 consecutive doses

For distressing respiratory secretions Clinical Communication: Review parenteral hydration with patient/ADM and MRHP

Choose ONE: glycopyrrolate 0.4 mg SUBCUTANEOUSLY every 1 hour PRN for distressing respiratory

secretions (less sedating effects) scopolamine hydrobromide 0.4 mg SUBCUTANEOUSLY every 1 hour PRN for

distressing respiratory secretions atropine 1% eye drops, apply 2 drops BUCCALLY every 1 hour PRN for distressing

respiratory secretions

For urgent symptoms midazolam 5 mg SUBCUTANEOUSLY 1 dose PRN and then midazolam 5 mg

SUBCUTANEOUSLY every 5 minutes PRN for refractory active seizure greater than 2 min and/or massive distressing hemorrhage. Notify MRHP if midazolam is ineffective after 3 consecutive doses

Consults and Referrals Consult Palliative Care for complex symptom management and support

Other Orders (For medication orders include: complete medication name, dose, route, frequency)

______________________________________________________________________

Discontinue the following medications: Discontinue: ____________________________________________________________


Relevant Guidelines, Procedures, Protocols

Relevant Guidelines Conservative Kidney Management (CKM)

Procedures Advance Care Planning and Goals of Care Designation Procedure Policy Advance Care Planning and Goals of Care Designation Policy Additional Resources Palliative and End of Life Care (PEOLC) Alberta Provincial Framework (2014)

Provincial PEOLC MyHealthAlberta website

Relevant Clinical Knowledge Topic Advance Care Planning and Goals of Care Designations, All Ages - All Locations

Analytics

Outcome Measure #1 Name of Measure Compliance to clinical standards of the Care of the Imminently Dying CKT

Definition The elements of the CKT for which it is important to measure compliance against in the order set are:

• for all C2 GCD patients, what number of times was the order set implemented

• usage of supporting documents and documents used congruently with the order set

Rationale Measure compliance to specified clinical standards within the CKT

http://ckmcare.com/

https://extranet.ahsnet.ca/teams/policydocuments/1/clp-advance-care-planning-hcs-38-01-procedure.pdf



https://www.albertahealthservices.ca/assets/info/seniors/if-sen-provincial-palliative-end-of-life-care-framework.pdf

https://myhealth.alberta.ca/palliative-care


Clinical Questions & Recommendations

Clinical Question 1: For adults in the last days of life, what effects does clinically assisted hydration have on delirium and agitation? Clinical Recommendation: There is insufficient evidence to define the benefits and harms of clinically assisted hydration on delirium and agitation. Studies need to account for various causes of (de)hydration (eg. oral intake, fever, perspiration, tachypnea, and medication) and baseline delirium/agitation. Quality of Evidence: Very low [GRADE 2] Strength of Recommendation: Insufficient evidence Search Strategy: MEDLINE (via Ovid), PubMed, CINAHL, Evidence-Based Medicine Reviews, and Google Scholar were searched from 2011 to current (2017) and filtered on English and human publications. Keywords used: Delirium, agitat*, dehydrat*, rehydrat*, hydrat*, fluid (therapy), end of life, death, terminal* ill*, dying, die, palliat*, imminent*, deteriorat* References: 1. Care of dying adults in the last days of life | Guidance and guidelines | NICE. Niceorguk.

2017. Available at: https://www.nice.org.uk/guidance/qs144. Accessed July 21, 2017. 2. Davies A, Waghorn M, Boyle J, Gallagher A, Johnsen S. Alternative forms of hydration in

patients with cancer in the last days of life: study protocol for a randomised controlled trial. Trials [serial online]. October 14, 2015;16:1-8. Available from: CINAHL Plus with Full Text, Ipswich, MA. Accessed July 21, 2017.

3. Good P, Richard R, Syrmis W, Jenkins-Marsh S, Stephens J. Medically assisted hydration for adult palliative care patients. Cochrane Database of Systematic Reviews. 2014. doi:10.1002/14651858.cd006273.pub3.

4. Bruera, Hui D, Dalal S, et al. 2013. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol 31(1):111-8

Clinical Question 2: For adults in the last days to hours of life, is intermittent opioid administration more effective (better symptom control and less adverse effects) compared to continuous opioid administration? Clinical Recommendation: Unable to make a recommendation due to insufficient evidence. Additional studies compare intermittent with continuous but not in imminently dying patients. The results of these studies are mixed. Quality of Evidence: Very low [GRADE D] Strength of Recommendation: Insufficient evidence Search Strategy: Turning Research into Practice (TRIP), MEDLINE (via Ovid), PubMed, and Google Scholar were searched. No limitation on dates due to limited number of studies. Keywords used: palliat*, end of life, dying, death, terminal* ill*, continuous, intermittent, opioid, opiate, morphine, hydromorphone, methadone, oxycodone, fentanyl, adverse, harm, benefit, QOL, pain, nausea, vomiting, dyspnea


References: 1. Cohen M, Anderson A, Krasnow S et al. Continuous Intravenous Infusion of Morphine for

Severe Dyspnea. Southern Medical Journal. 1991;84(2):229-234. doi:10.1097/00007611-199102000-00019.

2. Drexel H, Dzien A, Spiegel R et al. Treatment of severe cancer pain by low-dose continuous subcutaneous morphine. Pain. 1989;36(2):169-176. doi:10.1016/0304-3959(89)90020-1.

3. Watanabe S, Pereira J, Tarumi Y, Hanson J, Bruera E. A Randomized Double-Blind Crossover Comparison of Continuous and Intermittent Subcutaneous Administration of Opioid for Cancer Pain. Journal of Palliative Medicine. 2008;11(4):570-574. doi:10.1089/jpm.2007.0176.


Clinical Question 3: While literature supports use of opioids for relief of breathlessness for adults in the last days to hours of life who are opioid naive, what initial opioid dosing for breathlessness is most effective?

Clinical Recommendation: This question has not been directly tested (i.e. no study compared different doses to find a most effective dose) - therefore unable to propose a clinical recommendation for the question. Quality of Evidence: Low [Grade C] Strength of Recommendation: n/a Search Strategy: MEDLINE (via Ovid), PubMed, Cochrane Library, TRIP and Google Scholar were searched. No filter set for year of publication. Keywords used: end of life, palliat*, death, dying, terminal* ill*, breathlessness, dyspnea, dyspnoea, opioid-naive References: 1. Allen S, Raut S, Woollard J, Vassallo M. Low dose diamorphine reduces breathlessness

without causing a fall in oxygen saturation in elderly patients with end-stage idiopathic pulmonary fibrosis. Palliative Medicine. 2005;19(2):128-130. doi:10.1191/0269216305pm998oa.

2. Barnes H, McDonald J, Smallwood N, Manser R. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane Database of Systematic Reviews. 2016. doi:10.1002/14651858.cd011008.pub2.

3. Kloke M, Cherny N. Treatment of Dyspnoea in Advanced Cancer Patients: ESMO Clinical Practice Guidelines | ESMO. Esmoorg. 2017. Available at: http://www.esmo.org/Guidelines/Supportive-and-Palliative-Care/Treatment-of-Dyspnoea-in-Advanced-Cancer-Patients. Accessed July 21, 2017.

4. Mazzocato C, Buclin T, Rapin C. The effects of morphine on dyspnea and ventilatory function in elderly patients with advanced cancer: a randomized double-blind controlled trial. Annals of Oncology. 1999;10(12):1511-1514.

5. Navigante A, Cerchietti L, Castro M, Lutteral M, Cabalar M. Midazolam as Adjunct Therapy to Morphine in the Alleviation of Severe Dyspnea Perception in Patients with Advanced Cancer. Journal of Pain and Symptom Management. 2006;31(1):38-47. doi:10.1016/j.jpainsymman.2005.06.009.

6. Takeyasu M, Miyamoto A, Kato D et al. Continuous Intravenous Morphine Infusion for Severe Dyspnea in Terminally Ill Interstitial Pneumonia Patients. Internal Medicine. 2016;55(7):725-729. doi:10.2169/internalmedicine.55.5362.


Clinical Question 4: For adults in the last days to hours of life, is oxygen therapy effective in relieving dyspnea?

Clinical Recommendation: In cases of hypoxic respiratory distress only, oxygen therapy may be effective in relieving dyspnea for adults in the last days to hours of life. Use of oxygen therapy in non-hypoxic adults in the last days to hours of life is not supported. Quality of Evidence: Moderate [GRADE B] Strength of Recommendation: Strong [GRADE 1] Search Strategy: MEDLINE (via Ovid), PubMed, Cochrane Library, TRIP and Google Scholar were searched. Year of publication filter 2011-2017. Keywords used: end of life, palliat*, death, dying, terminal* ill*, breathlessness, dyspnea, dyspnoea, oxygen References: 1. Ben-Aharon I, Gafter-Gvili A, Leibovici L, Stemmer S. Interventions for alleviating cancer-

related dyspnea: A systematic review and meta-analysis. Acta Oncologica. 2012;51(8):996-1008. doi:10.3109/0284186x.2012.709638.

2. Campbell M, Yarandi H, Dove-Medows E. Oxygen Is Nonbeneficial for Most Patients Who Are Near Death. Journal of Pain and Symptom Management. 2013;45(3):517-523. doi:10.1016/j.jpainsymman.2012.02.012.

3. Five things physicians and patients should question in palliative care. Choosing Wisely Canada. Available at: https://choosingwiselycanada.org/palliative-care/. Accessed July 21, 2017.


Clinical Question 5: For adults in the last days of life, which type, frequency and dose of pharmacological agents are most effective for management of upper respiratory secretions?

Clinical Recommendation: Not enough good quality evidence to recommend any one medication, dose, frequency. According to NICE (2015), accessed in 2017, an antimuscarinic may be considered; specifically which one is dependent on a number of factors. Quality of Evidence: Low [GRADE C] Strength of Recommendation: n/a Search Strategy: MEDLINE (via Ovid), PubMed, CINAHL, TRIP and Google Scholar were searched from 2011 to current (2017) and filtered on English and human publications. Keywords used: Respiratory secret*, antimuscarinic, anticholinergic, antisecret*, end of life, death, terminal* ill*, dying, die, palliat*, imminent, deteriorat* References: 1. Palliative care - secretions | Document Summary. Evidencenhsuk. 2017. Available at:

https://www.evidence.nhs.uk/document?ci=https%3a%2f%2fcks.nice.org.uk%2fpalliative-care-secretions&returnUrl=Search%3fom%3d%5b%7b%22ety%22%3a%5b%22Guidance%22%5d%7d%5d%26ps%3d20%26q%3dpalliative%2bcancer%2bcare%2bsecretions&q=palliative+cancer+care+secretions. Accessed July 21, 2017.

2. Care of dying adults in the last days of life | Guidance and guidelines | NICE. Niceorguk. 2017. Available at: https://www.nice.org.uk/guidance/qs144. Accessed July 21, 2017.

3. Mercadamte S. Death rattle: critical review and research agenda. Supportive Care in Cancer. 2013;22(2):571-575. doi:10.1007/s00520-013-2047-5.

4. Wee B, Hillier R. 2008. Interventions for noisy breathing in patients near to death. Cochrane Database Syst Rev 23(1):CD005177.


References

1. Seymour J, Clark D. The Liverpool Care Pathway for the Dying Patient: a critical analysis of its rise, demise and legacy in England. 2018. Available from https://wellcomeopenresearch.org/articles/3-15/v1

2. National Institute for Health and Care Excellence. NICE guideline [NG31]: Care of Dying Adults in the Last Days of Life. London: National Institute for Health and Care Excellence. [Internet] 2015 [cited 2017 Apr 1]. Available from: https://www.nice.org.uk/guidance/ng31/evidence/full-guideline-pdf-2240610301

3. LACDP. One chance to get it right: improving people's experience of care in the last few days and hours of life. 2014 [Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf.

4. Kirk TW, Mahon MM. National Hospice and Palliative Care Organization (NHPCO) position statement and commentary on the use of palliative sedation in imminently dying terminally ill patients. Journal of pain and symptom management. 2010;39(5):914-23.

5. Kennedy C, Brooks-Young P, Brunton Gray C, Larkin P, Connolly M, Wilde-Larsson B, et al. Diagnosing dying: an integrative literature review. BMJ supportive & palliative care. 2014;4(3):263-70.

6. WHO. WHO Definition of Palliative Care 2013 [Available from: http://www,who.int/cancer/palliative/definition/en.

7. Glare P, Virik K, Jones M, Hudson M, Eychmuller S, Simes J, et al. A systematic review of physicians' survival predictions in terminally ill cancer patients. BMJ (Clinical research ed). 2003;327(7408):195-8.

8. Kastbom L, Milberg A, Karlsson M. A good death from the perspective of palliative cancer patients. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2017;25(3):933-9.

9. Coventry PA, Grande GE, Richards DA, Todd CJ. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age and ageing. 2005;34(3):218-27.

10. Simmons CP, McMillan DC, McWilliams K, Sande TA, Fearon KC, Tuck S, et al. Prognostic Tools in Patients With Advanced Cancer: A Systematic Review. Journal of pain and symptom management. 2017.

11. Sandvik RK, Selbaek G, Bergh S, Aarsland D, Husebo BS. Signs of Imminent Dying and Change in Symptom Intensity During Pharmacological Treatment in Dying Nursing Home Patients: A Prospective Trajectory Study. Journal of the American Medical Directors Association. 2016;17(9):821-7.

https://wellcomeopenresearch.org/articles/3-15/v1

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/One_chance_to_get_it_right.pdf

http://www,who.int/cancer/palliative/definition/en


12. Singer AE, Goebel JR, Kim YS, Dy SM, Ahluwalia SC, Clifford M, et al. Populations and Interventions for Palliative and End-of-Life Care: A Systematic Review. Journal of palliative medicine. 2016;19(9):995-1008.

13. Fan SY, Lin IM, Hsieh JG, Chang CJ. Psychosocial Care Provided by Physicians and Nurses in Palliative Care: A Mixed Methods Study. Journal of pain and symptom management. 2017;53(2):216-23.

14. Eun Y, Hong IW, Bruera E, Kang JH. Qualitative Study on the Perceptions of Terminally Ill Cancer Patients and Their Family Members Regarding End-of-Life Experiences Focusing on Palliative Sedation. Journal of pain and symptom management. 2017.

15. Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA internal medicine. 2014;174(12):1994-2003.

16. Canada Go. The 10 leading causes of death, 2013: Statistics Canada; 2013 [updated March 9, 2017. Available from: http://www.statcan.gc.ca/pub/82-625-x/2017001/article/14776-eng.htm.

17. Alberta Go. Alberta Annual Deaths Totals: Government of Alberta; 2016 [updated August 23, 2016. Available from: https://open.alberta.ca/dataset/alberta-annual-deaths-totals/resource/de6585f4-c945-4536-b9d5-fa991c0591f0.

18. Alberta Go. Leading Causes of Death: Government of Alberta; 2016 [updated August 23, 2016. Available from: https://open.alberta.ca/dataset/leading-causes-of-death/resource/3e241965-fee3-400e-9652-07cfbf0c0bda.

19. Alberta Go. Embracing an aging population: Government of Alberta; 2013 [Available from: http://www.seniors-housing.alberta.ca/seniors/aging-population.html.

20. AHS. Palliative and End of Life Care - Alberta Provincial Framework 2014: Alberta Health Services; 2014 [Available from: http://www.albertahealthservices.ca/assets/info/seniors/if-sen-provincial-palliative-end-of-life-care-framework.pdf.

Additional References Canadian Nursing Association. Ethics in Practice: Respecting Choices in End-of-Life Care: Challenges and Opportunities for RNs; 2015. Available from https://canadian-nurse.com/~/media/canadian-nurse/files/pdf%20en/respecting-choices-in-end-of-life-care.pdf.

http://www.statcan.gc.ca/pub/82-625-x/2017001/article/14776-eng.htm

http://www.statcan.gc.ca/pub/82-625-x/2017001/article/14776-eng.htm

https://open.alberta.ca/dataset/alberta-annual-deaths-totals/resource/de6585f4-c945-4536-b9d5-fa991c0591f0

https://open.alberta.ca/dataset/alberta-annual-deaths-totals/resource/de6585f4-c945-4536-b9d5-fa991c0591f0

https://open.alberta.ca/dataset/leading-causes-of-death/resource/3e241965-fee3-400e-9652-07cfbf0c0bda

https://open.alberta.ca/dataset/leading-causes-of-death/resource/3e241965-fee3-400e-9652-07cfbf0c0bda

http://www.seniors-housing.alberta.ca/seniors/aging-population.html

http://www.albertahealthservices.ca/assets/info/seniors/if-sen-provincial-palliative-end-of-life-care-framework.pdf

http://www.albertahealthservices.ca/assets/info/seniors/if-sen-provincial-palliative-end-of-life-care-framework.pdf

https://canadian-nurse.com/%7E/media/canadian-nurse/files/pdf%20en/respecting-choices-in-end-of-life-care.pdf

https://canadian-nurse.com/%7E/media/canadian-nurse/files/pdf%20en/respecting-choices-in-end-of-life-care.pdf


Appendix A: Sample - Care of Imminently Dying Pathway Instructions


Appendix B: Sample - Initial Care Needs Assessment


Appendix C: Sample – Nursing Symptom & Care Assessment and Documentation













Appendix D – Glossary of Terms

Table 2. Glossary of Terms

AAA Abdominal Aortic Aneurysm A localized widening of the abdominal aorta such that its diameter is more than 3 cm, or greater than 50% of normal size

Acute Mesenteric Ischemia

A sudden medical condition characterized by insufficient blood supply and subsequent injury to the small intestine

ACP Advance Care Planning

A process which encourages people to reflect and think about their values regarding clinically indicated future health care choices; explore medical information that is relevant to their health concerns; communicate wishes and values to their loved ones, their alternate decision-maker and their health care team; and record those choices

ACP/GCD Tracking Record

Advance Care Planning/ Goals of Care Designation Tracking Record

A record to document the decisions/next steps/outcomes of discussions related to ACP and GCD

ADM Alternate Decision Maker

A person who is authorized to make decisions with or on behalf of the patient. These may include a minor’s legal representative, a guardian, or ‘nearest relative’ in accordance with the Mental Health Act, an agent in accordance with a personal directive, a co-decision-maker, a specific decision-maker, supported decision-maker, or a person designated in accordance with the Human Tissue and Organ Donation Act. ADM and substitute decision maker (SDM) are equivalent terms.

Adult A person aged eighteen (18) years and older

Agent A person designated in a Personal Directive to make Personal Decisions on behalf of the patient


AHS Alberta Health Services

Aspiration

A medical condition in which liquids or substances are inhaled into the airway system, rather than the gastrointestinal tract, and which may result in swelling and infection of the lungs or large airways

CKTs Clinical Knowledge Topics

Provincial best practice/evidence-informed clinical guidance for defined diseases/conditions, specific patient populations or segments of a clinical pathway

Clinical Pathway

Evidence-informed, clinician-recommended, multi/interdisciplinary care to help a patient with a specific health condition or concern move progressively towards optimal health and outcomes. At completion a clinical pathway spans the entire patient journey across the continuum of care Note – Provider-specific segments may be completed on different time schedules; however, these segments need to support integration by addressing continuum of care through knowledge development collaboration with transition of care provider groups.

Clinical Practice Guideline

Systematically developed statements or recommendations to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances. They present indications for performing a test, procedure, or intervention, or the proper management for specific clinical problems. Guidelines may be developed by government agencies, institutions, organizations such as professional societies or governing boards, or by convening expert panels


COPD Chronic Obstructive Pulmonary Disease

A respiratory condition in which chronic obstruction of airflow in a person’s lungs interferes with their normal breathing and is not fully reversible

Diabetes Mellitus A chronic metabolic disorder characterized by persistently elevated blood sugar levels

EMS Emergency Medical Services

GCD Goals of Care Designation

One of a set of short-hand instructions by which health care providers describe and communicate general care intentions, specific clinically indicated health interventions, transfer decisions, and locations of care for a patient as established after consultation between the most responsible health practitioner and patient or alternate decision-maker

GCD Order Goals of Care Designation Order

A medical order that denotes the selected Goals of Care Designation

GI Gastrointestinal System Referring to a person’s internal abdominal organs, including the stomach, small and large intestine

Green Sleeve

A folder containing a patient’s GCD Order, along with an ACP/GCD Tracking Record, for the patient to own and produce at relevant health care encounters

HDC Hypodermoclysis Subcutaneous administration of fluids to the patient’s body

Hypertension A chronic medical condition characterized by persistent elevation of arterial blood pressure


ICD Implantable Cardioverter Defibrillator

A battery-powered device implanted under the patient’s skin and capable of cardioversion, defibrillation, and pacing of the heart

ICU Intensive Care Unit An inpatient unit that specializes in the care, treatment and monitoring of people with serious illness

Imminently dying

Any patient who, according to the most responsible health practitioner’s clinical assessment, is within the last hours to days of life

Liver Failure A medical condition characterized by liver malfunctioning

LOC Level of Consciousness A measurement of a patient's arousability and responsiveness to environmental stimuli

Metastases Spread of the malignant disease beyond the primary site and to other organs and areas of the patient’s body

MRHP Most Responsible Health Practitioner

The health practitioner who has responsibility and accountability for the specific Treatment/Procedure(s) provided to a patient and who is authorized by Alberta Health Services to perform the duties required to fulfill the delivery of such a treatment/procedure(s) within the scope of his/her practice

O2 Oxygen Therapy

The use of supplemental oxygen as a medical treatment, and that can be administered via nasal cannula, face mask, tracheal intubation or hyperbaric chamber

Patient All persons who receive or have requested health care or services from Alberta Health Services and its health care providers

Peritoneal Dialysis

A form of dialysis where the patient’s peritoneum, or lining of the abdominal cavity, is used as the membrane through which fluid and dissolved substrates are exchanged with the blood


Personal Directive

A written document in accordance with the requirements of the Personal Directives Act in which an adult names an Agent(s) or provides instruction regarding his/her personal decisions, including the provision, refusal and/or withdrawal of consent to Treatments/Procedures. A Personal Directive (or part of) has effect with respect to a personal matter only when the maker lacks Capacity with respect to that matter

Renal Failure A medical condition characterized by kidney malfunctioning

Care of the Imminently Dying (last hours to days of life), Adult - All Locations V1.0 Page 43 of 44

Acknowledgements We would like to acknowledge the contributions of the clinicians who participated in the development of this topic. Your expertise and time spent are appreciated. Name Title Zone Knowledge Lead Sonya Lowe Physician, Palliative Provincial Topic Lead Lorelei Sawchuk Nurse Practitioner, Palliative Edmonton Working Group Members Brenda Ireland Physician, Palliative South Russell Loftus Physician, Palliative Calgary Ayn Sinnarajah Physician, Palliative Calgary Anne Housworth Registered Nurse North Amy Regnier Registered Nurse North Danielle Denty Registered Nurse North Loretta Manning Registered Nurse North Lori Macisaac Registered Nurse South Pansy Angevine Registered Nurse Central Mary Sabbe Registered Nurse Central Clinical Support Services Cathy Biggs Pharmacy Information Management Governance

Committee (PIM-GC) on behalf of Pharmacy Services

Provincial

James Wesenberg on behalf of Laboratory Services - Provincial Networks

Provincial

Bernice Lau on behalf of Diagnostic Imaging Services Provincial Carlota Basualdo-Hammond, Marlis Atkins & Kim Brunet Wood

on behalf of Nutrition & Food Services Provincial

SCN or Provincial Committee Provincial Palliative and End-of-Life Care - Innovations Steering Committee (PPAL / EOL ISC)

Provincial

Other Committee Edmonton Zone Continuing Care of the Imminently Dying (Piloted as the End of Life Pathway) Working Group

Edmonton

Clinical Informatics Leads Katrina Simpson-Pineda

Registered Nurse Provincial

Leng My Registered Nurse Provincial Kellie Quian Registered Nurse Provincial

Care of the Imminently Dying (last hours to days of life), Adult - All Locations V1.0 Page 44 of 44

Additional Contributors Thank you to all provincial stakeholders who participated in the review process for this topic. Your time spent reviewing the knowledge topics and providing valuable feedback is appreciated. For questions or feedback please contact [email protected]

Documents

Provincial Clinical Knowledge Topic - extranet.ahsnet.ca · The Care of the Imminently Dying Pathway (see Appendices A-C) was initially developed and piloted by Edmonton Zone Alberta