Palliative Care in Cystic Fibrosis

Mike Aref, MD, PhD, FACP

Palliative Medicine Service, IU Health University Hospital

Assistant Professor of Clinical Medicine, Indiana University School of Medicine

Agenda

• Introduction

• Palliative Care

• Hospice

• Primary Palliative Care

• Goals of Care

• Symptom Management

Disclosure of Financial Relationships and Conflicts of Interest

None

Agenda

• Introduction

• Palliative Care

• Hospice

• Primary Palliative Care

• Goals of Care

• Symptom Management

DEATH HAS NO RESPECT FOR AGE

Median Death Age in Cystic Fibrosis

BMJ 2011;343:d4662

For select candidates, lung transplantation improves survival and quality of life.

The five-year survival post-transplant is about 50%

www.eperc.mcw.edu/EPERC/FastFactsIndex/265-Palliative-Care-for-Patien

SUFFERING DOESN’T RESPECT AGE EITHER*

Symptoms

• Cough• Dyspnea• Fatigue• Pain

www.eperc.mcw.edu/EPERC/FastFactsIndex/265-Palliative-Care-for-Patien

worsen as lung disease progresses

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Pain

Pediatrics 1996; 98(4):741 -747

DECREASE SUPPORT INCREASE MORTALITY

Socioeconomics and Mortality

BMJ 2011;343:d4662

Agenda

• Introduction

• Pall iative Care

• Hospice

• Primary Palliative Care

• Goals of Care

• Symptom Management

Palliative Care• The area of medicine that deals with alleviating

the physical, mental, spiritual and familial suffering of patients with chronic, progressive illness.

• Symptom management and setting goals of care in “life-limiting” illness.

• Palliative care is concerned with three things: the quality of life, the value of life, and the meaning of life.

• “Sufferology”.

Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.

Choosing Wisely

•Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.

http://www.choosingwisely.org/doctor-patient-lists/american-academy-of-hospice-palliative-medicine/

Evolving Model of Palliative Care

Cure/Life-prolongingIntent

Palliative/Comfort Intent

Bereavement

Bereavement

“Active Treatment”

PalliativeCare

DEATH

DEATH

http://www.nationalconsensusproject.org

Evolving Model of Palliative Care

Follow-up

Follow-up

DEATH

Comfort-Focused Care

Psychological and Spiritual Support

Disease-Focused Care

http://www.nationalconsensusproject.org

08/27/14 18

Type Goal Investigations Treatments Setting

Active (Blue)

To improve quality of life with possible prolongation of life by modification of underlying disease(s). Ex: Pt. who has potentially resectable pancreatic carcinoma. May require immediate symptom control or need guidance in setting future goals.

Active (eg, biopsy, invasive imaging, screenings)

Surgery, chemotherapy, radiation therapy, aggressive antibiotic use,Active treatment of complications (intubation, surgery)

In-patient facilities, including critical care units; Active office follow-up

Comfort (Green)

Symptom relief without modification of disease, usually indicated in terminally ill patients. Ex. Pt. who has unresectable pancreatic carcinoma, no longer a candidate for or no longer desires chemo or radiation therapy.

Minimal (eg, chest radiograph to rule out symptomatic effusion, serum calcium level to determine response to bisphosphonate therapy)

Opioids, major tranquilizers, anxiolytics, steroids, short- term cognitive and behavioral therapies, spiritual support, grief counseling, noninvasive treatment for complications

Home or homelike environmentBrief in-patient or respite care admissions for symptom relief and respite for family

Urgent (Yellow)

Rapid relief of overwhelming symptoms, mandatory if death is imminent. Shortened life may occur, but is not the intention of treatment (this must be clearly understood by patient or proxy). Ex. Patient who has advanced pancreatic carcinoma reporting uncontrolled pain (8 on a scale of 10), despite opioid therapy.

Only if absolutely necessary to guide immediate symptom control

Pharmacotherapy for pain, delirium, anxiety. Usually given intravenously or subcutaneously and in doses much higher than most physicians are accustomed to using.Deliberate sedation may need to be used and may need to be continued until time of death.

In-patient or home with continuous professional support and supervision

Victoria Classification of Palliative Care

Agenda

• Introduction

• Palliative Care

• Hospice

• Primary Palliative Care

• Goals of Care

• Symptom Management

Palliative Care and Hospice

Rosenberg, M et al, Clin Geriatr Med 2013; 29:1–29

Palliative CareSymptom Management of Life Limiting Illness

End of Life Care/HospiceSymptom Management and Comfort Care

Hospice and Palliative Care

• Hospice is for patients who are expected to die within less than 6 months.

Palliative care is for patients who you would not be surprised if they die within less than 6-12 months.

Hospice

It's a service not a sentence (it's hospice not house arrest).

Hospice is a program, not a place. Patient's with an estimated life-span of less

than six months who are no longer candidates for curative therapy are eligible for services.

Patient's requiring active symptom management, who are too tenuous to move, or are actively dying may be eligible for in-patient hospice. In these patients death is expected within 5 days.

Agenda

• Introduction

• Palliative Care

• Hospice

• Primary Pall iative Care

• Goals of Care

• Symptom Management

Pain/Symptom Assessment– Are there distressing physical or psychological symptoms?

Social/Spiritual Assessment– Are there significant social or spiritual concerns affecting daily life?

Understanding of illness/prognosis and treatment options– Does the patient/family/surrogate understand the current illness,

prognostic trajectory, and treatment options? Identification of patient-centered goals of care

– What are the goals for care, as identified by the patient/family/surrogate?

– Are treatment options matched to informed patient-centered goals?– Has the patient participated in an advance care planning process?– Has the patient completed an advance care planning document?

Transition of care post-discharge– What are the key considerations for a safe and sustainable transition

from one setting to another?

Weissman, DE, Archives in Internal Medicine 1997;157:733–737Weissman, DE et al, Journal of Palliative Medicine 2011; 14(1):1-8

Primary Palliative Care Assessment

Palliative Perception The patient:

– is not a candidate for curative therapy– has a life-limiting illness and chosen not to have life prolonging

therapy– has uncontrolled symptoms– has uncontrolled psychosocial or spiritual issues– has been readmitted for the same diagnosis in last 30 days– has prolonged length of stay without evidence of progress– has Catch-22 criteria: the indicated treatment of one potentially

fatal problem is contraindicated by another

http://www.capc.org/tools-for-palliative-care-programs/clinical-tools/ Central Baptist Hospital Palliative Care Screening Tool

Agenda

• Introduction

• Palliative Care

• Hospice

• Primary Palliative Care

• Goals of Care

• Symptom Management

Hope for the best, plan for the worst.

What are you hoping for?

What worries you the most?

What gives you strength?

Communication is NOT inherent

It is impossible NOT to improve

• Critical Care Communications (C3) Course– www.capc.org/palliative-care-professional-development/Training/c3-module-ipal-icu.pdf

• VitalTalk– www.vitaltalk.org

• Find a Coach– www.newyorker.com/magazine/2011/10/03/personal-best

Do-Not-Resuscitate not Do-Not-Treat!

•“DNR orders only preclude resuscitative efforts in the event of cardiopulmonary arrest and should not influence other therapeutic interventions that may be appropriate for the patient.”

JAMA. 1991;265(14):1868-1871.

www.indianapost.org

What’s a DNR?

DNR• A: DNR

• B: Limited or Full

• “If you find 'em dead, leave 'em dead.”

DNR with comfort measures• A: DNR

• B: Comfort Measures

• “When they're dying, dignity, peace, and comfort we’re trying”

Agenda

• Introduction

• Palliative Care

• Hospice

• Primary Palliative Care

• Goals of Care

• Symptom Management

Curative and Palliative

J Palliat Med. 2012; 15(1):106-14

Total Symptoms

Pain• Physical problems (multiple)

• Anxiety, anger and depression— elements of psychological distress

• Interpersonal problems — social issues, financial stress, family tensions

• Nonacceptance or spiritual distress

Dyspnea• Physical symptoms

• Psychological concerns

• Social impact

• Existential suffering

Curr Opin Support Palliat Care. 2008; 2(2):110-3

WHO Analgesic Ladder

Canadian Family Physician 2010; 56(6):514-517

Dyspnea Management

J Palliat Med. 2012; 15(1):106-14

THANK YOUQuestions? Concerns? Comments?