Keep Calm and Discuss Death:
Palliative Care for PAs
1.Generalist vs Specialist Palliative Care1-3
Our overall goal is to maximize quality of life for patients and families
A.Generalist Palliative Care
i.Difficult Conversations
ii.Advance Care Planning & Discussions of Goals of Care
iii.Symptom Management
iv.Patient and Family Support
B.Specialist Palliative Care
i.Multidisciplinary Approach—Advance Practice Nurses, Chaplains, Physicians, Physician Assistants, Social Workers
ii.Assessing Prognosis & Matching Goals of Care with Treatment Options
iii.Complex Pain and Symptom Assessment and Management
iv.Patient and Family Support
v.Comfort in the Last Days of Life
2.Difficult Conversations
A.Sit vs. Standing4
B.Generous Listening
i.“When we listen we are usually thinking. We may be deciding if we like or dislike what is being said, if we agree or disagree with it, if we believe it or not. We may be listening competitively. We may be listening with an agenda. As health professionals we are trained to listen for what is wrong and are concerned with whether or not we know how to fix it.”
© Rachel Naomi Remen, MD 2007 and The Institute for the Study of Health & Illness
C.Appreciate their Attendance
D.Try to get on the same page
E.Ask about their concerns and validate their emotions
F.Prioritize Goals
G.Be realistic
H.Have Options: Plan A, Plan B, maybe even Plan C.
3.Advance Care Planning
A.Make Time for this and Document!
B.Who & When?
i.Everyone 18 years and older should have an Advance Directive (AD)
ii.POLST—Anyone with a serious illness whom you would not be surprised if they had a year or less to live, OR that they may become unable to make their own decisions in that time.
1.Research has shown that up to 76% of patients will be unable to participate in their own end-of-life discussions.5
iii.New Patients—Just ask if they’ve every completed an AD or POLST
iv.Emergency Department Visits, Inpatient Admissions
v.Annual/Physical Exams
vi.New Diagnoses of a Serious Illness—don’t forget about those diseases that don’t seem terminal.
vii.Hospital Follow-Ups
viii.Change in Treatment Plan and Options
ix.Change in Goals
x.We know that patient’s prefer discussions early in their disease course.6 Parkinson’s patients, for example, have a median time to death from diagnosis of 11 years—yet they have years of symptoms and disability and talking earlier is preferred.7
xi.Parkinson’s patients without and Advance directive noted screening higher for depression.6
xii.Most patients find the time just before a diagnosis or treatment more stressful than any other—consider a palliative care consult early!8 Palliative care can in Scotland is actually starting to be called “anticipatory care.” “Managing uncertainty” can go a long way to help people sustain their identify and more successfully cope with advanced illness.9
xiii.Atul Gwande in his book Being Mortal noted that “The battle of being mortal is the battle to maintain the integrity of one’s life. . .”10
The Conversation
xiv.UFOUFO11
1.Understand: Elicit the Patients understanding of their medical situation
2.Fill in the Gaps
3.Outcomes: elicit the range of patients desired outcomes, hopes, fears, expectations
4.Understand: find out more why they want what they want
5.Feasible Outcomes: describe the range of outcomes you believe are possible with treatment
xv.SPAM11
1.Surrogate: Determine Surrogate Decision Maker
2.Preferences: Assess patient preferences for Care
3.Assume Full Code/Treatment: notify patients about the presumption of full treatment
4.More Discussion: Ensure the dialog remains open
xvi.Conversation Starters and Tips12
1.How would you assess your health status?
2.What do you hope for with respect to your health—what do you expect?
3.Do you have any fears or concerns?
4.Do you spend any time thinking about dying?
5.Would you be surprised if something happened in the next x months?
6.Have you shared any of your thoughts or fears with your loved ones?
7.How much information about what is likely to be ahead with your illness would you like from me?
8.If your health worsens, what is most important to you?
9.What abilities are so critical to your life that you can’t imagine living without them?
10.If you become sicker, how much are you willing to go through for the possibility of gaining more time?
C.The Advance Directive
i.Oregon Advance Directives
ii.Washington Advance Directives
D.The POLST
i.Oregon POLST
1.Tip: Start the Conversation with Section B
ii.Washington POLST
iii.The Conversation Project
Great Resource for Patients and Families to start the conversation
E.Symptom Management
i.Pain Management Tips
1.For Chronic and Severe Pain
a.Give Baseline Medication around the clock—consider long-acting
b.Breakthrough Pain
i.Oral: 5-15% of daily baseline dose (24hour total) every 1-2 hours
- Ex: Patient receiving morphine ER at a dose of 100mg every 12 hours (100mg x 2=200mg Daily) should get 10-30mg of morphine IR every 1-2 hours.
ii.IV: 50-100% of the hourly infusion rate every 10-15minutes
- Ex: Patient receiving hydromorphine IV at 1mg/hour should get a rescue dose of 0.5mg to 1.0mg every 10-15minutes.
iii.Balance Analgesia and Side effects
c.Opioid Titration
i.Titrate upward until relief is achieve or side effects supervene
- Increase by 25-50% each increment if pain is severe
- Consider switching to a long-acting form once pain is stable
- Intervals between dose escalations should be long enough for medications to reach a steady state:
- 2-3 days for long-actings
- 3-6 days for fentanyl TD
- 5-7 days for methadone
d.Opioid Rotation
i.For poor opioid responsiveness, pain crisis
ii.Side effects are intolerable (ex: myoclonus)
iii.Opioid-Induced Hyperalgesia
iv.To Rotate:
- Calculate the equianalgesic dose
- For all opioids, reduce the dose for incomplete cross tolerance
- Exception is fentanyl—follow package guidelines
- Others reduce by 25-50%
- Methadone—reduction is more like 75-90%, get help if unfamiliar
v.Equianalgesic Tables13
Opioid Equianalgesic Doses
Drug / Oral/Rectal (mg) / IV/SC (mg)Morphine / 30 / 10
Oxycodone / 20 / N/A
Hydromorphone / 7.5 / 1.5
Hydrocodone / 30 / N/A
Oxymorphone / 10 / 1
Fentanyl / N/A / 100mcg (single dose
Oral 24hr Morphine (mg/day) / TD Fentanyl Dose (mcg/hour)
60-134 / 25
135-224 / 50
225-314 / 75
315-404 / 100
Recommended Initial Transdermal Fentanyl Dose Based on Daily Oral Morphine Dose
Methadone Conversion from Morphine Equivalent
Morphine Equivalent / Methadone : Morphine Ratio<100 mg / 1 : 3
101 mg-300 mg / 1 : 5
301 mg-600 mg / 1: 10
601 mg-800 mg / 1 :12
801 mg-1000 mg / 1 : 15
>1000mg / 1 : 20
2.Metastatic Bone Pain13,14
a.NSAIDs—naproxen 500mg PO, then 500mg PO Q 8 hours—limited by GI, renal and cardiac affects
b.Steroids—dexamethasone 1-4mg PO/IV BID, up to 16mg daily, taper to lowest affect dose for the shortest period of time—measured in weeks, not month! Avoid evening/bedtime doses
c.Bisphosphonates—pamidronate 60-90mg infusion, zolendronate 4mg infusion—usually patient’s note help after a week, results can last 4-6weeks and can be repeated
3.Neuropathic Pain14
a.Gabapentin—start at 100-300mg at bedtime and increase as tolerated, goal is 300mg TID for a therapeutic dose, can also help with anxiety
b.Venlafaxine—start at 37.5mg daily and increase 37.5-75mg weekly as tolerated
c.Duloxetine—start 30mg daily, titrate to 60mg after a week if tolerated
4.Consider Pain Specialist Consult for Blocks
ii.Nausea & Vomiting
1.Consider the M’s
a.Metastases
b.Meningeal irritation
c.Movement
d.Mental anxiety
e.Medications
f.Mucosal irritation
g.Mechanical obstruction
h.Motility
i.Metabolic
j.Microbes
k.Myocardial
2.Things you may not have thought of…14
a.Schedule your medication—don’t wait for the nausea
b.Dexamethasone—consider for CNS tumor, pressure, liver capsulitis, 4-8mg PO/IV every 4-8 hours
c.Haloperidol—metabolic causes, bowel inflammation or compression, bowel obstruction 0.5mg-1mg PO/IV every 6-12 hours prn, up to 5-20mg per day in divided doses
d.Olanzipine—metabolic causes, 2.5mg-10mg PO/SL at bedtime
e.Lorazepam—anticipatory nausea, 0.5-1.5mg PO/IV every 4-8hours
f.Dronabinol—chemo-related, 2.5mg BID, up to 20mg/day
g.Octreotide—malignant bowel obstruction, 100mcg-200mcg IV TID
iii.Dyspnea (Breathlessness)
1.The only reliable measurement is the patient’s self report
2.Look at respirations—not the pulse-ox
3.Management
a.Treat the underlying cause
i.Consider pleural catheter to manage malignant effusions
ii.Raise the head of the bead!
iii.Treat anxiety
b.Opioids of the mainstay of managing chronic and acute dyspnea
c.Long-acting opioid are shown to help in COPD patients
d.Morphine 5-10mg PO Q 3-4hours
e.Morphine SR 15-30mg PO Q12 hours
f.Morphine infusions—titrate to effect at the end-of-life, the goal is to get respirations back down to around 20 breaths/minute
g.If already on morphine, increase dose 50%
h.Morphine isn’t the only opioid that treats dyspnea!
They all work to some extent.
4.Artificial Nutrition & Hydration
A.FOOD Trials Showed
i.Avoid early use of tube feeding in dysphagic stroke patient
ii.If needing to feed early, choose NG first
B.Feeding Tubes do not prevent aspiration pneumonia
C.Can Result in earlier death versus comfort feeding
D.Remember, it’s harder to withdraw than withhold, however, sometimes a trial may be appropriate
E.Dry mouth—hydration is not going to help, consider swabs with favorite beverages to taste
F.Hypodermoclysis15-18
i.Subcutaneous infusion can help with hydration and IV medication administration when trying to avoid or cannot use an IV (ie. home hospice)
1.Safer than IV
2.Slow absorption benefit for heart failure and renal failure patients
G.“Say Comfort Feeding Only” versus “No Tube Feeding”
5.Where to Go At the End-of-Life
A.Hospital with Comfort Care?
i.Is the patient stable enough to discharge from the hospital and can we replicate symptom management and care outside of the hospital?
B.Home with Hospice?
i.Hospice is the right resource when:
1.There are no longer medical options for improving care and the focus on comfort can be done outside of the hospital
2.Medical options no longer meet the patient and/or family’s goals, and not returning to the hospital is a new goal
ii.Hospice Provides:
1.24/7 Phone Support, but not 24/7 at home care
a.If symptoms worsen at 3am, you have someone to call, talk things through and either adjust medications/care, or the nurse will come out at 3am—no going to the ED, no waiting for clinic to open
2.Medications, Equipment—the things you need to be at home
3.Nursing visits—1-2 times a week on average
4.Volunteers, bath aids, social work and chaplain support, post-death bereavement support
5.Remember, the family are the primary caregivers. Make sure they can reasonably do this and still be able to be spouse, son/daughter, mother/father
C.Facility with Hospice?
1.When care is too great to do at home (wound care)
2.When there is simply not the caregiving support needed at home
3.Hospice partners with the facility which provides Intermediate Level Care (ICF)—room/board, basic nursing care—and hospice manages the medications and symptoms and provides all the other services they would normally provide at home
D.Inpatient Hospice?
i.Technically inpatient facilities, with a focus on providing hospice care in a more comfortable setting outside of the hospital
1.Oregon has 3—Portland, Albany, and Bend
2.Vancouver, WA area has 3—two in Vancouver, one in Longview
ii.Pain Requiring:
1.Complicated technical medication delivery requiring an RN for calibration, tubing, or site care (ex. IV symptom management)
2.Frequent evaluation by physician or nurse
3.Aggressive treatment to control pain
4.Frequent medication adjustment
iii.Symptom changes such as:
1.Sudden deterioration requiring intensive nursing intervention
2.Uncontrolled nausea and vomiting
3.Pathologic fractures
4.Respiratory distress which becomes unmanageable
5.Open lesions requiring frequent skilled care
6.Traction and frequent repositioning requiring more than one staff member
7.Complex wound care requiring complex dressing changes
8.Severe agitated delirium or acute anxiety or depression secondary to the end-stage disease process requiring extensive intervention
9.Imminent death
NOTE: imminent death without a need for aggressive symptom management is not a reason.
E.Taking Care
i.Caring for the Family
1.Ask for Updates from Specialists and other Providers
2.Offer the patient and Family Support in Decision Making—sometimes they want your recommendation so the burden is not fully on them
3.Check-in with caregivers
ii.Take Care of Yourself
1.Ask for help when needed
2.Talk about patients with your colleagues
3.Don’t take this stuff home!
4.Check-in with your staff and support them as well
F.PAs Providing Hospice Care—It’s not far off!
i.Current legislation that will allow CMS and Medicare to reimburse PAs to care for their patients on hospice and write orders
1.US Senate:
a.S.1354 - Medicare Patient Access to Hospice Act of 2015
b.S.2748 - Palliative Care and Hospice Education and Training Act
2.US House
a.H.R.1202 - Medicare Patient Access to Hospice Act of 2015
b.H.R.3119 - Palliative Care and Hospice Education and Training Act
Visit Congress.gov
G.Other Resources:
i.Fast Facts:
ii.Physician Assistant in Hospice and Palliative Medicine (PAHPM):
iii.American Association of Hospice and Palliative Medicine: aahpm.org
1.Good self-study series if you have CME $$:
iv.Yale School of Medicine: Palliative and End-of-Life Curriculum:
v.Choosing Wisely:
vi.Measurement & Evaluation Tools:
vii.Hospice Criteria:
viii.Medicare FAQ’s Regarding Reimbursement/Billing for Advance Care Planning Conversations:
Questions?
Contact me:
Jeff Myers, PA-C, MMsc, MIH
Palliative Care Service and Instructor
Oregon Health Science University
Knight Cancer Institute, Hematology/Oncology
email:
Highlighted References
1.Broom A, Good P, Kirby E, Lwin Z. Negotiating palliative care in the context of culturally and linguistically diverse patients. Intern Med J. 2013;43(9):1043-1046.
2.Broom A, Kirby E, Good P. Referral to specialist palliative care. Intern Med J. 2012;42(9):1040-1042.
3.Weissman DE, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the Center to Advance Palliative Care. J Palliat Med. 2011;14(1):17-23.
4.Swayden KJ, Anderson KK, Connelly LM, Moran JS, McMahon JK, Arnold PM. Effect of sitting vs. standing on perception of provider time at bedside: a pilot study. Patient Educ Couns. 2012;86(2):166-171.
5.Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Annals of internal medicine. 2010;153(4):256-261.
6.Tuck KK, Brod L, Nutt J, Fromme EK. Preferences of patients with Parkinson's disease for communication about advanced care planning. Am J Hosp Palliat Care. 2015;32(1):68-77.
7.Miyasaki JM, Kluger B. Palliative care for Parkinson's disease: has the time come? Curr Neurol Neurosci Rep. 2015;15(5):26.
8.Murray SA. Set a low bar for starting palliative care. BMJ (Clinical research ed). 2016;353:i3598.
9.Kimbell B, Murray SA, Macpherson S, Boyd K. Embracing inherent uncertainty in advanced illness. BMJ (Clinical research ed). 2016;354:i3802.
10.Gawande A. Being mortal: Medicine and what matters in the end. Toronto, Ontario: Doubleday Canada; 2014.
11.White J, Fromme EK. "In the beginning...": tools for talking about resuscitation and goals of care early in the admission. Am J Hosp Palliat Care. 2013;30(7):676-682.
12.Serious Illness Conversation Guide. 2015; Accessed June 16, 2016, 2016.
13.Weinstein SM, Portenoy, R.K., Harrington, S.E. Unipac 3: A Resource for Hospice anbd Palliative Care Professionals, Assessing and Treating Pain. 4th ed. Glenview, IL: American Academy of Hospice and Palliative Medicine; 2012.
14.Quill TE, Bower, K.A., Holloway, R.G., Stevens Shah, M., Caprio, T.V., Olden, A., Storey, C.P. Primer of Palliative Care. 6th ed. Chicago, Illinois: American Academy of Hospice and Palliative Medicine; 2014.
15.Bruno VG. Hypodermoclysis: a literature review to assist in clinical practice. Einstein (Sao Paulo, Brazil). 2015;13(1):122-128.
16.Humphrey P. Hypodermoclysis: an alternative to I.V. infusion therapy. Nursing. 2011;41(11):16-17.
17.Martin CM. Hypodermoclysis: renewed interest in an old technique. The Consultant pharmacist : the journal of the American Society of Consultant Pharmacists. 2010;25(4):204-206, 209-212.
18.Schoenbeck SL, McBride K. Hypodermoclysis: easy, safe, cost-effective. The Journal of practical nursing. 2010;60(1):7-8.
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