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OUTPATIENT PALLIATIVE CARE Helping Patients with Transitions in Life Terrance James, NP St Charles Advanced Illness Management Team

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Page 1: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

OUTPATIENT PALLIATIVE CAREHelping Patients with Transitions in Life

Terrance James, NP

St Charles Advanced Illness Management Team

Page 2: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

OBJECTIVES• Understanding what palliative care is and isn’t – difference from primary

and hospice care

• Palliative cares emerging role in the Big 3 – Cancer, Heart Disease and Obstructive Lung Disease

• Understanding how to frame patient care holistically in the setting of transitions in care – changes in stage, worsening severity of disease and reduction in function

• Using Palliative Care principles to help with management of disease and improving quality vs quantity of life

Page 3: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

PALLIATIVE CARE• 1950s Started as an offshoot of the hospice movement in the – Dr. Cicely

Saunders in the UK who founded the modern hospice movement

• 1960s Dr. Kubler-Ross began discussions of a different way to treat dying and terminally ill people – honest communication, openness and respect

• 1970s Dr. Balfour Mount a surgical oncologist in Canada coined the phrase palliative care due to the negative connotations of hospice; brought holistic care to tertiary care/academic medicine centers for people with chronic or life-limiting diseases and their families who were experiencing physical, psychological, social, or spiritual distress

• 1997 IOM report on end of life “Approaching Death: improving care at the end of life” (M.I. Field and C.K. Cassel, editors) released

• 2006 there were 57 palliative medicine programs and 100 trainees and Palliative care became an established medical specialty

Page 4: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

PALLIATIVE CARE• Is not hospice….

• Is not pain management….

• Is not always end of life care

• Does not always mean days to live….

• Can include advanced care planning, goals of care discussions, and symptom management….

• Can take place inpatient, outpatient or both…

Page 5: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

PALLIATIVE CARE

• PALLIATIVE CARE IS AN INTERDISCIPLINARY APPROACH TO

SPECIALIZED MEDICAL, SOCIAL WORK, CHAPLAIN AND NURSING

CARE FOR PEOPLE WITH LIFE-LIMITING ILLNESSES – COULD BE MONTHS

OR YEARS THERE IS NO TIME FRAME. IT FOCUSES ON PROVIDING RELIEF

FROM THE SYMPTOMS, PAIN, PHYSICAL STRESS, AND MENTAL STRESS AT

ANY STAGE OF ILLNESS. THE GOAL IS TO IMPROVE QUALITY OF LIFE

FOR BOTH THE PATIENT AND THEIR FAMILY.

Page 6: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

PALLIATIVE CARE

• PALLIATIVE CARE CAN INCLUDE SYMPTOMS RELIEF, HOLDING FAMILY MEETINGS TO

DISCUSS TREATMENT AND GOALS OF CARE, AND COORDINATION OF CARE.

• YOU CAN STILL GET TREATMENT WITH CURATIVE INTENT WHILE GETTING PALLIATIVE

CARE.

• BECAUSE OF THIS MANY PROGRAMS ARE USING TERMS LIKE ADVANCED ILLNESS

MANAGEMENT AND CANCER OR OTHER DISEASE SUPPORTIVE CARE INSTEAD OF

USING THE WORD PALLIATIVE

Page 7: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

PALLIATIVE CARE

• Our primary role initially was in the world of oncology care

• There have been expanding roles for palliative care in other areas

• Cardiology now has a greater acceptance of palliative care particularly in setting of congestive heart failure

• Pulmonology has emerged as another area for good palliative care in the setting of the scourge of obstructive lung disease

Page 8: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

MOST COMMON CANCER DIAGNOSES IN THE US 2019

Cancer Type Estimated New Cases Estimated DeathsBladder 80,470 17,670Breast (Female – Male) 268,600 – 2,670 41,760 – 500Colon and Rectal (Combined) 145,600 51,020

Endometrial 61,880 12,160Kidney (Renal Cell and Renal Pelvis) Cancer 73,820 14,770

Leukemia (All Types) 61,780 22,840Liver and Intrahepatic Bile Duct 42,030 31,780

Lung (Including Bronchus) 228,150 142,670

Melanoma 96,480 7,230Non-Hodgkin Lymphoma 74,200 19,970Pancreatic 56,770 45,750Prostate 174,650 31,620Thyroid 52,070 2,170

With the advent of new treatment modalities patients are living longer but often with longer treatment durations and therefore symptom burdens associated with their treatments

Example – Immunotherapies are leading to in some cases cures or disease free survival of years but are associated with a host of autoimmune and other conditions – including autoimmune hepatitis, colitis, dermatitis etc.

Page 9: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

SYMPTOM MANAGEMENT IN CANCER

• Nausea • Pain• Constipation• Diarrhea• Cramping• Headaches• Seizures• Urinary obstruction• Agitation and encephalopathy• Anxiety• Depression• Cachexia

Page 10: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

HEART DISEASE: MOST COMMON DIAGNOSES

Coronary artery disease (CAD)

Congestive heart failure

Cardiac arrhythmia

Stroke

Peripheral vascular disease (PVD)

Valvular disease

Patients are living longer, new treatments such as TAVR and valve assist devices are being used in older and sicker patients making symptom burden and tricky questions about quality of life and when to stop care more difficult.

Page 11: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

SYMPTOM MANAGEMENT IN HEART DISEASE

• Nausea

• Chest Pain

• Constipation

• Cramping

• Headaches

• Urinary Issues

• Edema

• Anxiety

• Shortness of breath

• Cachexia

• Lower extremity skin issues

Page 12: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

LUNG DISEASES

Asthma

Collapse of part or all of the lung (pneumothorax or atelectasis)

Swelling and inflammation in the main passages (bronchial tubes) that carry air to the lungs (bronchitis)

COPD (chronic obstructive pulmonary disease)

Lung cancer

Lung infection (pneumonia)

Abnormal buildup of fluid in the lungs (pulmonary edema)

Blocked lung artery (pulmonary embolus)

With medical management patients particularly with obstructive lung disease are living longer and dealing with diminished quality of life and symptoms associated with their disease

Page 13: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

SYMPTOM MANAGEMENT IN RESPIRATORY ISSUES

• Dyspnea

• Chest Pain

• Tachypnea

• Headaches

• Edema

• Anxiety

• Cachexia

Page 14: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

GOALS OF CARE DISCUSSIONS We should also think Beyond Symptoms…

What are your goals of care?

What brings you joy?

Advanced Directives and POLST forms can sometimes help or hinder the conversation

Don’t come with an agenda – let the patient and family guide the discussion

Meeting the patient and family where they are at focusing on their needs and wishes while also giving them honest assessments of their medical issues

Page 15: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

CASE #1: 48 YO FEMALE WITH STAGE 4 BREAST CANCER

STARTED ON IMMUNOTHERAPY AFTER 2 ROUNDS OF CHEMOTHERAPY

Where should we start? How do we find an entrance to having a discussion about What are the common symptom needs of advanced breast cancer patient?

Page 16: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

CASE #2: 86 YEAR OLD MALE WITH STAGE 4 PROSTATE CANCER

PATIENT FAILED CHEMICAL CASTRATION AND NOW ON COMBINATION OF ENDOCRINE AND CHEMOTHERAPY

How does age play a role in how we talk to patients about cancer and treatment? What if his ECOG status was a 1 and he was skiing and biking last summer?What are common symptoms in this patient population?

Page 17: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

ECOG PERFORMANCE STATUS

GRADE ECOG PERFORMANCE STATUS

0Fully active, able to carry on all pre-disease performance without restriction

1

Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work

2

Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours

3Capable of only limited selfcare; confined to bed or chair more than 50% of waking hours

4Completely disabled; cannot carry on any selfcare; totally confined to bed or chair

5 Dead

How oncologists are supposed to determine if a patient is eligible for treatment

Underused tool to help clinicians think about patient function

*Oken M, Creech R, Tormey

Page 18: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

CASE #3: 59 YEAR OLD MALE WITH ASBESTOSIS, COPD AND STAGE 3 LUNG CANCER

WHAT ARE THE RELEVANT TOOLS WE HAVE TO HELP HIM ENDURE CANCER TREATMENT?

How does younger age impact patient and family expectations of treatment?

Page 19: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

ADVANCED CARE PLANNING – WHAT IS IT AND HOW DO WE DO IT WELL?

WHAT ARE SOME TOOLS WE CAN USE TO HELP HAVE AN ADVANCED CARE PLANNING DISCUSSION

Page 20: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

• Use signposting to make a few minutes for advance care

planning. It signals to your patient that a new topic is

coming.

• When patients sound uncertain about advance care

planning, slow down, invest a moment in setting up your

explanation, and attend to your patient’s uncertainty.

• When you talk about surrogate decision makers, setting

up an A or B choice makes it easier.

• You can frame advance care planning as “hope for the

best and plan for something we’re hoping doesn’t

happen”.

• Try asking about a ‘what if’ situation to locate advance

care planning in the future and distinguish it from now.

• The real goals of advance care planning are to (1) begin

understanding the patient’s values, and (2) begin thinking

with the patient about the future in a non-threatening way.

Page 21: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

POLSTAdvance DirectiveA Voluntary Legal Document

POLSTA Voluntary Medical Order

For all adults regardless of health status at any age, starting at age 18

For those with advanced illness, or frailty, or a limited prognosis at any age, depending on health status

1)Appoints a legal decision-maker2) Memorializes values and preferences3) Is signed by the patient

Is a specific medical order and is signed by a Health Care Professional.

Provides for theoretical situations in which a person may not have capacity for decision making.

Guidelines for imagined future situations which may arise and for which a person may have preferences for a particular kind of care plan.

Provides for likely events that can be foreseen.

Specific medical orders addressing defined medical interventions for situations that are likely to arise given the patient’s health status and prognosis.

Page 22: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

POLST GRAND ROUNDExtensive resources online through OHSU – highly recommend this ground rounds https://echo360.org/media/b823cada-3d2c-448f-827f-020570e315b5/public

Using this as a tool for patient goals, a bounce off point for bigger discussions, and as a help to families, couples and individuals to get the care they want

Page 23: Outpatient Palliative Care · palliative care • palliative care is an interdisciplinary approach to specialized medical, social work, chaplain and nursing care for people with life-limiting

LAST CASE! CASE #4: 33 YO WITH CARDIOMYOPATHY AND CONGESTIVE HEART FAILURE IN THE SETTING OF ALCOHOL AND METHAMPHETAMINE ABUSE

Palliative care as a bridge to transplant

Linkage of care to behavioral health and substance abuse care

Coordination with cardiology and primary care

Support of family