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Practice Support Program
End of Life
Learning Session 3
• End of Life Practice Support Program Committees:
Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris
Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr.
Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr.
Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr.
Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher,
Pat Porterfield, Della Roberts, Christina Southey
• BC Hospice Palliative Care Association Learning
Centre for Palliative Care: Hospice Palliative End-ofLife Primary Care Provider Education Project
• Fraser Health End of Life Care Program: Advance Care
Planning initiative
• Gold Standards Framework
Welcome back
Patient/Family/Community’s voice
(10 minutes)
Report back
(60 minutes)
PSP Storyboard template for End of Life
Team Name:___________
Team members – Team picture
• List team members and roles
Our team aim
An aim template for team:
We aim to improve _________(name of process or
topic) in _____(location) so that _______ (a
numerical goal), by ________ (time period)
Measures: Sample
Practice Key Measures
# of pts identified and placed on a registry
% of pts on the registry that had an ESAS and
or PPS (as appropriate)
% patient on registry who have been given My
Voice (or other) and had an ACP conversation
% of patients on a registry with a collaborative
proactive care plan in place
Additional practice measures (only if additional
measures used)
What did we do?
• Summary of what you did
(if you tested multiple changes in the action period pick
your top 1 or 2 to share)
• What did you learn?
• Did things change from baseline in your measures?
Patient story
Provider story
Summary of current status
• Successes:
• Challenges and/or barriers:
• What we are planning to test next:
All teams share!
End-of-life symptom
management & addressing the
question of hydration
(20 minutes)
Based on materials from:
•Mark Turris RN, MSN, CHPCN (C), “Symptom Management in the
Last Days to Hours of Life”, Vancouver Home Hospice Consult Team
•Pat Porterfield, Presentation on “Food & Fluids”, Victoria Hospice
Medical Care of the Dying Course
•Fraser Health Hospice Palliative Care Symptom Guidelines
Physical symptoms experienced at endof-life
1. Pain
2. Shortness of Breath
3. Nausea & Vomiting
4. Agitation
Physical symptoms/changes experienced
at end-of-life (continued)
5. Fatigue
6. Sleepiness
7. Inability to Swallow
8. Loss of appetite
9. Dehydration
Actively Dying
In the context of a progressive life-threatening illness
1. Low level of consciousness – sleep with
occasional periods of alertness or sleeping
2. Changes in breathing patterns – apnea,
rapid shallow breathing, Cheyne-stokes, &/or
moist respirations (respiratory congestion)
3. Incontinence of urine &/or feces
4. Color & temperature changes – cyanosed
nail beds, pallor (face), coolness of
Managing pain at End of Life
1. Most common is use of sc meds, either
continuation of previous opioid or initiation of
low dose of hydromorphone or morphine
2. Transdermal meds can be continued, but
usually available in too high a dose to initiate
at this time
3. Sublingual & sub-buccal
Normal respiratory changes
• Mouth breathing, therefore dry mouth
• Provide mouth care with a soft tooth
brush and water, plus non-petroleum
gel to lips with turns or care
Respiratory congestion
• Respiratory secretions – avoid unnecessary
fluids or deep suctioning
• Gurgly respirations – saliva over vocal chords
• Glycopyrrolate 0.1-0.2 mg sc q6-8h regularly;
doesn’t cross Blood Brain Barrier
• Atropine eye drops s/l or 0.4-0.8 mg sc q4h
regularly & prn
• Scopolamine sc 0.3-0.6 mg q4-6 h reg & prn
• “ Opioids, Opioids, Opioids “
• Likely work through opioid receptor, same as for
• Often very low doses help, i.e. Hydromorphone
0.5mg s.c. q4h regularly and 0.1 mg q 30 min
• Poor evidence for inhaled opioids
Dyspnea (continued)
• Nozinan: starting dose 2.5 to 5 mg q8h and titrate to effect. Start low
to test tolerance as wide variation in patient response. Elderly
patients generally respond better to nozinan than benzodiazepines.
• Benzodiazepines: Lorazepam 1-2mg q4h sl/sc, midazolam
intermittently or csci 1-4 mg/hr for for severe dyspnea & anxiety
• Non-drug measures – fan, open window
• Oxygen-if available, esp. if pt known to be hypoxic & oxygen has
assisted in the past, and if does not increase restlessness; in
imminently dying phase, do not monitor O2 sats & may remove O2
as death approaches & dyspnea no longer a concern
Terminal restlessness
• Pt. unconscious and moving about in bed
• Common - usually multifactorial – system failure,
infections, pain, full bladder, etc.
• Rule out any physical causes such as: pain,
urinary retention, or constipation.
• If all physical causes ruled out – may be
• If cannot be reversed, needs to be treated
Terminal restlessness (continued)
Neuroleptics first choice for restlessness &
 Nozinan (methotrimeprazine) 10-50 mg sc q4-8h
and titrate,
 Haloperidol 0.5- 5mg sc q4-8 h
Benzodiazepines: lorazepam 1-2 mg sl/sc q4h
prn on an adjunct basis – a Midazolam
continuous sc infusion 1-4 mg/hr via CADD
Pump for severe restlessness/agitation
Food & fluids at end of life
Useful questions to ask in assessing withdrawal
from food & fluids during the illness:
• Is the reduction in intake appropriate to the
phase of the illness? Cancer treatment or
palliation? Importance of performance status.
Consider cachexia/anorexia syndrome
• Is the patient’s mood/relationship with
significant others normal?
• Is the patient satisfied with their ability to eat and
drink? If focus is palliation, this is most
Fluids within the terminal phase
• Preference for oral sips and good mouth care
• If concern re the need for hydration in other
forms such as hypodermoclysis or IV, discuss
family’s understanding & expectations:
withdrawing from food and fluid is a
common aspect of the dying process
parenteral therapy is not nutrition
reduced food/fluid is not uncomfortable
thirst can be addressed with good mouth
care; hydration does not prevent thirst
Burdens of hydration
• Increased fluid can contribute to symptoms such as
edema, ascites, resp. congestion, nausea & vomiting
• Complexity and discomfort associated with
administering fluids may increase agitation and
create a need for restraint (chemical or physical)
• May affect where the patient dies
• Increased need to void
• Dehydration may act as a natural anesthetic
• May prolong suffering/dying rather than living
Benefits of hydration
• Reduces cognitive impairment; may improve
delirium/terminal agitation at the end of life esp.
if related to neurotoxicity, hypercalcemia
• May prolong dying/survival (which can be seen
as helpful if pt/family waiting for an event etc.)
• May fulfill pt/family expectations
• Can be initiated as a trial
Resources for family to help with
understanding the dying process
• Patient education materials such as
 Booklet: Preparing for the death of a loved one
 Caregiver’s resources
 Virtual Hospice website
• “When death is near” article
GPAC Palliative Care Part III:
Grief and Bereavement
(25 minutes)
Is this a good death? Who decides?
US Institute of Medicine (1997): “One that is free from
avoidable suffering for patients, families, and caregivers; in
general accord with patients’ and families wishes; and
reasonably consistent with clinical, cultural, and ethical
Patient perspectives: A “good death”
• Pain and symptom management.
• No prolongation of dying.
• Sense of control:
 Clear approach to decisions and roles.
• Strengthening relationships:
– “Doing for others”; not a burden.
• Continuity of self:
– Before, during, and after illness.
• Meaning and completion.
• Life review, purpose and meaning.
Preparations for death
• Education and support for caregivers/family.
• You may need to prepare, guide, and
interpret the experience.
• Dialogue about dying and
preparations that need to be made.
• People who need to visit (and
those who don’t).
• Issue of “unfinished business”.
• Funeral plans/wills.
• ANTICIPATION is essential
Explaining the dying phase and preparing the
• Patient withdrawing from world around them
• Refusing tablets, food and drink or basic nursing
care (need to exclude obvious clinical depression)
• Decreased appetite, decreased oral intake
• Decreased circulation, mottling, tachycardia
• Changes in breathing patterns with respiratory
congestion (trapped secretions) or periods of apnea.
• Changes in level of consciousness
• Occasionally confusion, agitation, delirium
• Changes in perception: Awareness of “other”.
Can the family do this?
• Practically?
 Elderly couple.
 Singles.
 Confusion/ incontinence/costs.
• Psychologically?
 Mental health or addiction issues.
 Out of keeping with family’s expected role or
usual activity.
End of Life care check list for likely home death
• Points to consider when patients enter the dying phase:
 Reconfirm a patient's goals of care, preferred place of
care, what to do in an emergency.
 Connect with home nursing (already in place)
 Ensure that required forms are completed (No CPR
and/or Notification of Expected Home Death).
 Discontinue non-essential medications.
End of Life care check list (continued)
• Arrange for subcutaneous (SC) / transdermal
medication administration or a drug kit to be placed in
the home when a patient is no longer able to take
medications by mouth.
• Arrange for a hospital bed +/- pressure relief mattress.
• Arrange for a Foley catheter as needed.
• Leave an order for a SC anti-secretion medication
(e.g., atropine, glycopyrrolate).
Useful websites
When a home death is preferred:
If home death not an option………
• Identify alternatives in your area.
• If hospice
 May differ in each Health Authority but will require involvement of
palliative care team and clarification of goals of care (No CPR; No
dialysis; prognosis < 3 months; no IVs; no further acute
 Per diem cost (~ $30/day).
 More stable re symptom management.
 Private rooms and support for families.
 Do you need a back-up plan?
At the time of death
• Management of terminal symptoms.
• Support, with all team members, including
spiritual care
• Acceptance of dying as a normal process.
• Acknowledge the death
• Patient/family as the unit of care.
• Effective communication
• Check with family about all practical
What equips GPs to give quality care in the
last days of life?
• Strong relationships with Community Nurses and
local palliative care teams.
• Good access to these resources.
• Shared clinical practice guidelines.
• Adequate remuneration for the time intensive
nature of the work.
• Availability and familiarity with local “medication
kits” or pharmacy arrangements.
Supporting grief and bereavement
• Bereavement: the loss of a significant person and also
the period of adjustment for the bereaved after the loss.
• Grief: the normal response to the loss of someone or
something precious.
• Mourning: the social expression of grief after a death,
associated with rituals and behaviours within the
appropriate religious and cultural context.
Classes of grief
• Typical (Normal)
• Anticipatory
• Complicated
• Disenfranchised
• Unresolved
Understanding normal grief and how to support
• 85% of grief experiences follow a normal pathway - it’s
not about fixing it.
• In the context of a death, grief is a complex lifelong
process that involves transforming a relationship rather
than detaching from it.
• We all grieve differently - allow for diversity.
• It often gets worse before it gets better.
• You can’t prevent grief, but you can try to develop
elements of resilience.
Understanding normal grief and how to support
it (continued)
• Lifestyle Management
– What is helpful for them
– “Homework”
• Education
Normalize the process not “going crazy”
What to expect
What is helpful
Giving hope
Key phrases
Clichés to avoid
• Pharmacology
Communication strategies to support grieving
• Use the deceased’s name.
• Acknowledge the death – “I am sorry James is gone”.
• Talk about the deceased and memories, ask about “What
are you remembering about James today?”
• Bring closure to the death “Do you have questions about
James’ final illness or treatment?”
• Talk about grief feelings: “How has James’ death affected
Key phrases
• “I am sorry”
• “It must be hard for you”
• “What would be most useful right now?”
• “Do you want to talk about it?”
• “Do you have someone you would like me to call?”
• “What do you miss most about James?”
• “What would you like me to do for you?”
• “What are your supports?”
Clichés to avoid
• “ I understand” or “ It’s for the best”
• “There was a reason” or “ It’s God’s will”
• “I know how you feel”
• “Time heals”
• “You will get over it”
• Avoid giving examples of those who are “worse off”
• Disallowing patient's feelings “ You should be getting over
this by now”
• Giving early advice
Complicated grief
• Need to recognize early because:
 Symptoms of complicated grief post loss are highly
predictive of impairment and complications at 13 and
24 months post loss.
 Rate of depression is 15-35% during the first year after
loss of a spouse.
 Suicide risk especially after loss of a child, loss of a
spouse (older men) and sudden traumatic loss.
 Higher rates of morbidity, mortality, health care
utilization, alcohol, tobacco, sedatives and impaired
immune function.
• Every member of staff should know how to access.
• Handouts / leaflets.
• BC Bereavement Helpline and other counseling/ grief
support resources.
• Local hospice society.
• Legal issues/ custody issues / public guardian and trustee
• Specialist areas – children, teenagers, mental health and
Practical tips for the office
• An immediate phone call to family/ caregiver.
• Inform and debrief with all staff in the office.
• Send a card – some staff may want to write
something too.
• Ensure all appointments are cancelled.
• Phone CHNs to thank and debrief.
• A follow up visit at 4 - 6 weeks.
• Another at 6 months.
Billing criteria for new incentive
(10 minutes)
Case study – Mr. James Lee
• Mr. James Lee is a 74 yr old retired electrician.
• Has a history of COPD, hypertension and was diagnosed
with Prostate cancer 6 yrs ago (at age 68 yrs).
• Followed by both an urologist and a radiation oncologist
and maintained on hormone therapy.
• His COPD has been managed in a shared care manner
with a respirologist.
• Every fall you have undertaken a review of his COPD
Action plan and this has kept him fairly stable.
14053 COPD CDM
Office visit
• Last year, (5 yrs after the original diagnosis) James
indicated that he was having pain in his back and
• The radiation oncologist organized radiation for pain relief
and coordinated changes in hormone therapy; the
radiation relieved the pain initially.
17100 Office Visit
Community patient conferencing
• Fax your request to the oncologist and he calls the next
day re: some interim management and development of a
plan to manage his symptoms.
• Communicate this info to James by phone.
• Total GP time for conferencing 20 minutes.
14016 Community Patient Conferencing
Example for specialist:
10002 Oncologist billing code (non-urgent up
to 1 week)
Counseling visit for patient
• At the next appointment, you discuss the Advance Care
Plan and undertake counseling James on the outlook of
his prognosis and his related anxieties – 25 min
counseling visit.
17120 Office Counselling
Urgent advice
• James is feeling quite poorly. You decide to urgently
consult his respirologist on options for management in the
• Respirologist calls you within 20 minutes and you discuss
James’ current status
17100 Office Visit
14018 Urgent (<2hr) Telephone advice from
Spec/GP with spec training
10001 Respirologist billing code for the
urgent telephone advice
Office counseling for family members
• You arrange a meeting with the daughter to discuss her
concerns. You undertake counseling with her that takes
30 minutes.
00120 Office Counselling (for daughter)
Daily MRP care, discharge planning fee
• When you are not on call, there is a decline: hospital in
respiratory failure.
• He is seen by the respirologist on call in consultation.
• James remains in hospital 5 days.
• A 30 minute discharge planning care conference.
• You providing MRP care daily and he is first patient seen
each day; respirologist support.
13008 Hospital acute care visit X 5 (Daily
MRP care)
13338 First visit bonus X 5 days
14017 Discharge Planning care
conference X 2 units
Palliative care planning fee
• James is now ready for referral to BC Palliative Care
Benefits Plan and a Home Care Referral for assessment
of the home.
• Discuss a safety net.
• Complete BC Palliative Care Benefits Plan referral and
the No CPR form.
• 30 min palliative planning visit.
17100 Office Visit
14063 Palliative Care Planning Fee
Community patient conferencing fee
• You contact the Home Care nurse to discuss the likely
trajectory and anticipated events. You and the nurse
discuss the care plan, agree on channels of
communication and ensure the MOA is aware of these
priority arrangements. 15 minutes total conferencing time.
14016 Community Patient Conferencing
House call
• Joint visit with the Home Care Nurse and assess their
current goals of care and capacity to remain at home.
• Following the visit, you and the Home Care Nurse review
and revise the plan of management based on input from
James and his family – 20 min.
14016 Community Patient Conferencing
00103 House Call
1X200 Out of office age appropriate visit
fee for additional pts seen at house
Support of home care nurse
• Home care nurse agrees to call you at least
weekly regarding the situation and you decide to
visit every couple of weeks. Plans are made for
an expected death at home.
13005 Advise about patient in community care
00103 Home Visit
1X200 Out of office age appropriate visit fee for
additional pts seen at house call
Other fees
• 00127 +/- 13338 Terminal care facility visit (depending
on patient Dx/condition only regardless if in “palliative
bed” or not - acute/LTC/hospice).
• 00115 Urgent LTC visit 0800 – 2300, 7 days/wk.
• 00114, +/- 13334 Routine long term care visit.
• 00112, 01200-2 + out of office visit Specially called to
see in acute care or hospice.
• 13008/13028 +/- 13338 Acute care visits.
• 14015 Facility Patient Conferencing.
Continuing the improvements in
your local community
(30 minutes)
You’ve had a head start!
The involvement of families and community
members in your improvement work will help you
 More partners in care
 Accountability and encouragement from team mates
 Maximizing community and family support
We can all work as one to
continue improving changes in
our practice and community!
Table Discussion
With your community team discuss what you would
like to improve in the practice and community, is it:
 A specific change?
 A measured outcome from your efforts?
 An underlying culture of improvement?
 Relationships established in the community?
 A combination?
(20 min)
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for
Innovation and Improvement, 2007
Sustainability of Clinical Redesign
in Your Practice
(20 minutes)
What are you trying to sustain
With your community team discuss what you would
like to sustain in the practice and community, is it:
A specific change?
A measured outcome from your efforts?
An underlying culture of improvement?
Relationships established in the community?
A combination?
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for
Innovation and Improvement, 2007
Strategies to sustain the changes
• Be clear about the benefits (use measurement)
• Establish and document standard processes and
have a plan for ongoing training
• Establish an ongoing measurement processes
• Make changes to job descriptions and policies
and procedures to reflect change
• Celebrate success!
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for
Innovation and Improvement, 2007
Predictors of sustainability
• Staff, providers and patients can describe why they
like the change and it’s impact
• Providers and staff are confident and can assist in
explaining to others
• Job descriptions reflect new roles
• Measurement is part of the practice and used to
monitor progress
• The change is no longer ‘new’, but ‘the way we do
things around here’
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation
and Improvement, 2007
Table discussion: Sustainability activity
• At your table, develop a plan for increasing the
probability of sustaining your improvement work
• Use one or more of the strategies outlined in the
previous slide, or come up with others
• Share your ideas with the group
(10 min)
This is just the beginning!
• What would you like to
achieve in the coming
• How will you know that
you’ve achieved it?
• What small change can
you make in the near
future that will make
further improvements?
Next steps …
• Ongoing support
• Informal meeting
and calls
Thank you!