Palliative Care in Otolaryngology Kenneth M. Grundfast, MD, FACS Wednesday September 3, 2008
Palliative Care in Otolaryngology
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Questions: 1. 2.
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What is palliative care? What is palliative care in otolaryngology? Why should we discuss palliative care? Palliative Care in Otolaryngology
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Palliative Adjective Moderating pain or sorrow by making it easier to bear. Noun Remedy that alleviates pain without curing. Source: WordNet 1.7.1 Copyright © 2001 by Princeton University. All rights reserved. Date "palliative" was first used in popular English literature: sometime before 1657 Palliative Care in Otolaryngology
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Palliative Care
Relieving symptoms without attempting to cure the disease; often refers to treatment of terminal disease Often linked with hospice care; American Academy of Hospice and Palliative Medicine (AAHPM) Can have an expanded scope – all care that is not directed toward complete cure Palliative Care in Otolaryngology
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Palliative Medicine • •
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A new ABMS medical specialty Many specialists were hospitalists, oncologists, some intensivists, pulmonologists, psychiatrists, a pediatric otolaryngologist Hospitals are developing palliative care teams Can request a consult from a palliative care team Palliative Care in Otolaryngology
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When to request a palliative medicine consult.
Current therapeutic regimen no longer effective
Patient’s suffering cannot be alleviated
Cannot control disease Cannot alleviate symptoms Patient, family, physician having difficulty coping
Need advice, expertise in dealing with issues of death and dying Palliative Care in Otolaryngology
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Palliative Care for Surgeons
American College of Surgeons has developed principles of palliative care Principles Guiding Care at End of Life Statement of Principles of Palliative Care was endorsed when it was recognized that palliative care is equally appropriate to patients earlier in the course of illness, including those receiving life-prolonging treatments. American College of Surgeons: Principles Guiding Care at End of Life. Bulletin of the American College of Surgeons 1998;83:46. ACS Statement of Principles of Palliative Care. Bulletin of the American College of Surgeons: 2005;90(8):34-35. Palliative Care in Otolaryngology
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ACS Principles of Palliative Care
Respect the dignity and autonomy of patients, patients' surrogates, and caregivers. Honor the right of the competent patient or surrogate to choose among treatments, including those that may or may not prolong life. Communicate effectively and empathically with patients, their families, and caregivers. Identify the primary goals of care from the patient's perspective, and address how the surgeon's care can achieve the patient's objectives. Strive to alleviate pain and other burdensome physical and nonphysical symptoms Palliative Care in Otolaryngology
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ACS Principles of Palliative Care
Recognize, assess, discuss, and offer access to services for psychological, social, and spiritual issues. Provide access to therapeutic support, encompassing the spectrum from life-prolonging treatments through hospice care, when they can realistically be expected to improve the quality of life as perceived by the patient. Recognize the physician's responsibility to discourage treatments that are unlikely to achieve the patient's goals, and encourage patients and families to consider hospice care when the prognosis for survival is likely to be less than a half-year. Palliative Care in Otolaryngology
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ACS Principles of Palliative Care
Arrange for continuity of care by the patient's primary and/or specialist physician, alleviating the sense of abandonment patients may feel when "curative" therapies are no longer useful. Maintain a collegial and supportive attitude toward others entrusted with care of the patient. Palliative Care in Otolaryngology
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Core Competencies for Surgical Palliative Care = Patient Care
Possess the capacity to guide the transition from curative and palliative goals of treatment to palliative goals alone based on patient information and preferences, scientific and outcomes evidence, and sound clinical judgment Perform an assessment and gather essential clinical information about symptoms, pain, and suffering Perform palliative procedures competently and with sound judgment to meet patient goals of care at the end of life Provide management of pain and other symptoms to alleviate suffering. Communicate effectively and compassionately bad news and poor prognoses Conduct a patient and family meeting regarding advance directives and end-of-life decisions Exercise sound clinical judgment and skill in the withdrawal and withholding of life support Care in Otolaryngology Palliative 11
Core Competencies for Surgical Palliative Care = Medical Knowledge
Acute and chronic pain management Non-pain symptom management Ethical and legal basis for advance directives, informed consent, withdrawal and withholding of life support, and futility Grief and bereavement in surgical illness Quality of life outcomes and prognostication Role of spirituality at the end of life Palliative Care in Otolaryngology
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Core Competencies for Surgical Palliative Care = Practice Based Learning
Recognize quality of life and quality of death and dying outcomes as important components of the morbidity and mortality review process Understand their measurement and integration into peer review process and quality improvement of practice Be skilled in the use of introspection and self monitoring for practice improvement Palliative Care in Otolaryngology
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Core Competencies for Surgical Palliative Care = Professionalism
Surgeons must maintain professional commitment to ethical and empathic care, which is patient focused, with equal attention to relief of suffering along with curative therapy. Respect and compassion for cultural diversity, gender, and disability is particularly important around rituals and bereavement at the end of life. Maintenance of ethical standards in the withholding and withdrawal of life support is essential. Palliative Care in Otolaryngology
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Karnofsky Performance Scale
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Palliative Performance Scale %
Ambulation
Activity and Evidence of Disease
Self-Care
Intake
Conscious Level
100
Full
Normal Activity No Evidence of Disease
Full
Normal
Full
90
Full
Normal Activity Some Evidence of Disease
Full
Normal
Full
80
Full
Normal Activity with Effort Some Evidence of Disease
Full
Normal or Reduc ed
Full
70
Reduced
Unable Normal Job / Work Some Evidence of Disease
Full
Normal or Reduc ed
Full
60
Reduced
Unable Hobby / House Work Significant Disease
Occasional Assistance Necessary
Normal or Reduc ed
Full or Confusion
50
Mainly Sit/Lie
Normal or Reduc ed
Full or Confusion
Unable to Do Any Considerable Work Assistance ExtensivePalliative Disease Care in Otolaryngology Necessary
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Palliative Performance Scale 40
Mainly in Bed
As Above
Mainly Assistance
30
Totally Bed Bound As Above
As Above
Total Care
As Above
Total Care
10
As Above
As Above
Total Care
0
Death
-
-
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Palliative Care in Otolaryngology
Norm a or Reduc Reduc ed ed Minim al Sips Mouth Care Only -
Full or Drowsy or Confusio Full n or Drowsy or Confusio Full or n Drowsy or Confusio Drowsy n or Coma -
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Why discuss palliative care in otolaryngology ?
Palliative Care in Otolaryngology
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Why discuss palliative care in otolaryngology ?
Approximately 75% of patients seen in an otolaryngology practice need no surgery; usually, 4 office patients seen for every one that needs a surgical procedure done Some conditions within the scope of an otolaryngology practice have no known cure or usual treatment is a mode of management known to be only partially effective Cancer and benign tumors cannot always be totally excised; surgery can cause dysfunction Palliative Care in Otolaryngology
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Why discuss palliative care in otolaryngology ?
Advancements in Otolaryngology
Advancements in Palliative Care
What we need to learn and know
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Palliative Care in Otolaryngology
Otology-neurotology
Head and neck oncology
Cancer
Laryngology
Hearing loss, tinnitus
Voice, swallowing
Rhinology and allergy
Intractable chronic rhinosinusitis Palliative Care in Otolaryngology
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Concepts of cure
Total cure
Partial cure
Eradicate the condition / assure that the condition does not recur = back to normal Improve the condition / get better but not back to normal
Unattainable cure
Medical and/or surgical management will not alter the course of the condition or disease Palliative Care in Otolaryngology
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Patient Expectations Alleviate symptoms Preserve function Preserve life Cope with the condition and the situation
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Surgeon’s Options Observe, explain, reassure, but not actively intervene = observation, watchful waiting Intervene with medical management Intervene with surgical management
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What can an otolaryngologist do for the patient if unable to cure the condition that the patient has?
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57 year old Vietnamese man admitted to Boston Medical Center September 8, 2007
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Past history and exam
PMH: Was seen initially in our clinic in May 2007 with two week history of lower right neck mass that was non-tender, associated with change in voice, seven pound weight loss in previous month
Smoked ½ pack cigarettes per day x 40 years + 2 beers per day
Exam:
Right supraclavicular 4.5x4.5 cm. Level 4 fixed mass Flexible laryngoscopy – normal cords, cord motion Palliative Care in Otolaryngology
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Studies done in 2007
CT thorax: “extensive bulky conglomerate lymphadenopathy throughout the mediastinum and right hilum and a parenchymal or peribronchovascular mass in the medial aspect of the right upper lobe.” CT of the neck with contrast: “Right supraclavicular and anterior mediastinal nodal conglomerates intimately associated with the right brachiocephalic and proximal common carotid arteries.” Palliative Care in Otolaryngology
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Studies done in 2007
PET scan: “mutifocal increased FDG-uptake corresponding to the bulky supraclavicular, mediastinal and hilar nodes as well as the right upper lobe mass noted on CT scan. Additional foci of increased FDG-uptake were present in a small prevascular node and within the left lung hilum, possibly indicating contralateral node spread.” MRI scan: confirmed the presence of metastatic disease in the brain. Palliative Care in Otolaryngology
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Diagnosis and management in 2007
Fine Needle Aspiration of the supraclavicular node was positive for metastatic moderately differentiated adrenocarcinoma. The cytological changes and immunohistochemical profile were consistent with a primary lung tumor. Patient was diagnosed with stage IV non-small cell lung cancer involving the neck and brain. He was referred to Radiation Oncology and Medical Oncology for treatment and was told to follow up with Otolaryngology if and when the need arose. Had XRT and chemotherapy Palliative Care in Otolaryngology
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Patient returns in September 2008
Chief complaint: sore throat, dysphagia, increasing hoarseness, progressively worsening difficulty breathing ROS: cough, wheezing Exam: Cachectic, multiple enlarged cervical nodes both sides of the neck; nodular thyroid NPL: bilateral immobile vocal cords with 2-3 mm glottic opening Now biopsies demonstrate that he has metastases to brain, thyroid, and inguinal lymph nodes Palliative Care in Otolaryngology
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Consult Palliative Care Team
Assist delivering bad news
Experience comprehending patient’s cultural beliefs Experience with family meeting, interpreting family dynamics; healthy care proxy
Deciding on limits of care Proceed to tracheotomy Supportive care, pain management, hospice Palliative Care in Otolaryngology
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Palliative Care in Otolaryngology Otolaryngology Clinics of North America Grundfast Kenneth M, Dunn Geoffrey P February 2009
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Tracheotomy near the end of life
Important interface between palliative care team and otolaryngologists Decision making far more complex and difficult than the surgical procedure Specific indications and risks to be considered in the patient who is near death Palliative Care in Otolaryngology
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Tracheotomy in Palliative Care T.Chan + A. Devaiah
Tracheotomy facilitates assisted ventilation in patients with progressive neuromuscular disorder such as ALS Provides comfort and ability to speak when patient has been intubated for a long time and likely will need continued assisted ventilation Helps in management of chronic aspiration, improves pulmonary toilet A difficult choice near the end of life Palliative Care in Otolaryngology
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Why would the patient who is near death need to have a tracheotomy?
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Why would the patient who is near death need to have a tracheotomy? NOT A GOOD IDEA
No need to intervene when interventions are being curtailed Risks inherent in anesthetizing and operating on morbidly ill patient Taking away a natural way to die Potentially limits options for further care and placement / disposition
MAYBE A GOOD IDEA
Avoid death from suffocation Avoid larynx complications if life is prolonged Provide increased comfort Allows patient to speak with family members and loved ones before dying Facilitate care and placement
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Rehabilitation after Cranial Base Surgery – S. Jalisi + J. Netterville
Cranial nerve 1: Permanent anosmia, caution not to use cooking gas at home; noxious gas detectors at home Cranial nerve 2: If orbital exenteration, then prosthesis, depend on vision other eye Cranial nerve 3: If ptosis, levator muscle tightening, insert weights in eyelid Cranial nerve 4: Visual training, eye muscle surg. Cranial nerve 5: Oral training for mastication, movement food bolus, swallowing Cranial nerve 6: Yse refractive prisms Palliative Care in Otolaryngology
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Rehabilitation after Cranial Base Surgery – S. Jalisi + J. Netterville
Cranial nerve 7: hypoglossal to facial anastamosis; temporalis or masseter muscle transposition; gracilis free tissue transplant Cranial nerve 8: BAHA, CROS hearing aid Cranial nerve 9: assist with swallowing; pharyngeal flap for V-P incompetence Cranial nerve 10: Swallowing therapy, cricopharyngeal myotomy, phonosurgery Palliative Care in Otolaryngology
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Rehabilitation after Cranial Base Surgery – S. Jalisi + J. Netterville Cranial nerve 11: Physical therapy Cranial nerve 12: Swallowing therapy --------------------------------------------------- Patients need to know prior to surgery the functional impairments that are likely to occur following surgery Total excision versus de-bulking of tumors All surgery today versus some surgery today and more surgery later
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When the tumor recurs after surgical excision: S. Jalisi + A Elackattu
Chemotherapy / radiation therapy De-bulking for symptom relief Management of fungating lesion, wound care --debridelment, dressings Microvascular free flap Mucositis – oral hygiene, oral care products Xerostomia - Vitamin C, saliva substitutes Cachexia – nutrition Hospice care, end of life orders Palliative Care in Otolaryngology
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Refractory Chronic Rhinosinusitis E. Mahoney + R. Metson
Subset of patients with CRS continue to have troublesome symptoms despite medical and then surgical management “Sinusitis spectrum”: local disease and anatomic factors versus systemic factors; the “intermediates” Patients who fail initial medical/surgical therapy need extensive medical assessment Palliative Care in Otolaryngology
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Tips on Management of Refractory Chronic Rhinosinusitis
Neurology evaluation – rule out migraine, other disorders Immuno-modulatory therapy – IVIG infusion Leukotriene inhibitors Aspirin de-sensitization Saline irrigations Longterm antibiotic therapy Topically administered antibiotic Antifungal therapy Discussions about changing expectations to treatment Palliative Care in Otolaryngology
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Recurrent Respiratory Papillomatosis K. Johnson + Craig Derkay
By definition, the disorder recurs Goal is airway and voice preservation Mainstay is repetitive surgical procedures Antiviral therapy Treat extra-esophageal reflux Immuno-therapy Birth canal, HPV vaccines Psychosocial considerations, family dynamics Palliative Care in Otolaryngology
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Disorders of Swallowing S. Langmore, G. Grillone, A. Elackattu, M. Walsh
Surgical options – crico-myotomy, tracheo-esophageal diversion, laryngeal suspension, glottic closure Botox to control sialorrhea Change texture of feedings Enteral feeding Electrical stimulation, neural implant Palliative Care in Otolaryngology
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Disorders of Swallowing S. Langmore, G. Grillone, A. Elackattu, M. Walsh
In consultation with the patient and caregivers, determine what his/her priorities and wishes are regarding prolonging life versus maximizing quality of life. Is a feeding tube a viable option? Is aspirationpreventing surgery an option? Is preventing aspiration a high priority? Refer to a speech pathologist who specializes in swallowing disorders for behavioral and dietary therapy. Be sure that the speech pathologist understands the patient's priorities in terms of quality of life, health, and preventing aspiration. Palliative Care in Otolaryngology
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Disorders of Swallowing S. Langmore, G. Grillone, A. Elackattu, M. Walsh
Continue to work with a speech pathologist as the disease/condition worsens as long as the patient is eating anything orally or has hopes of eating anything orally. Rehabilitative techniques will evolve toward compensatory techniques as the patient’s condition worsens Feeding tubes and tracheostomy tubes are not always maximally helpful for intractible dysphagia. They may help or worsen the swallowing problem and may not entirely avoid the risk of developing pneumonia. They should be considered 'last resorts' not the first solutions. Palliative Care in Otolaryngology
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Dysphonia and Dysarthria
S. Cohen, A. Elackattu, P. Noordzij, M. Walsh, S. Langmore Voice, speech therapy Alaryngeal speech / TE speech Phonosurgery Presbyphonia:
Voice therapy Bilateral medialization laryngoplasty
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Tinnitus A. Shulman + B.Goldstein
“Tinnitology”, a new discipline
Wide range in severity and ability to cope T T T= tinnitus targeted therapy = combination of medication + instrumentation such as tinnitus masker MATP= medical audiologic tinnitus patient protocol; Feldman masking curves Transcortical magnetic stimulation Surgery for otosclerosis Medication: Klonopin + / - Neurontin Alternative therapies: Ginko, acupuncture, etc
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Anosmia D. Lafreniere + N. Mann
Occurs in the elderly, like presbycusis, can be associated with Alzheimer’s Disease, Parkinson’s Disease No specific treatment; zinc and alpha lipoic acid have been tried Need to counsel patient – take steps to avoid asphyxiation from carbon monoxide or other noxious gases Palliative Care in Otolaryngology
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Chronic Subjective Dizziness (CSD) M. Ruckenstein + J.P. Staab 1. Persistence > 3 months of symptoms including one or more of the following:
Chronic lightheadedness Heavy-headedness Subjective imbalance frequently not apparent to others Feeling that “inside of the head” is spinning with absence of perception of movement in the visual surround Feeling that the floor is moving underneath Feeling of being detached from one’s environment Palliative Care in Otolaryngology
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Chronic Subjective Dizziness (CSD) M. Ruckenstein + J.P. Staab 1.
2.
Chronic hypersensitivity to one’s own motion and/or to movement of objects in the environment Exacerbation of symptoms in settings with complex visual fields such as grocery stores or shopping malls or when performing precision visual tasks such as working at a computer Palliative Care in Otolaryngology
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CSD Association with other disorders
Anxiety Migraine Traumatic brain injury
Treatment of CSD Psycho-education Medications: SSRI’s Behavioral interventions Palliative Care in Otolaryngology
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Tips on Management of CSD
Educate to the patient about how malfunction within the brain can cause symptoms Address any underlying anxiety disorder with psychotherapy, medications including antidepressants and anxietolytics, either alone or in combination with each other Teach patient how to access information using the internet. Vestibular Disorders Association Let the patient know that you and your team are and will be easily accessible to provide support Palliative Care in Otolaryngology
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Vestibular Rehabilitation C.D. Hall + L. Clarke Cox
Goal: reduce subjective symptoms, improve gaze and postural stability particularly during head movements
Mechanisms:
Habituation – long lasting attenuation of a response to a provocative stimulus Adaptation – remaining vestibular system adjusts output according to demands placed on it Substitution – substitute alternative strategies for missing vestibular function; visual clues instead of vestibular input Palliative Care in Otolaryngology
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Progressive hearing loss A. Kozak + K. Grundfast
Progressive hearing loss can be frightening Some medical treatments but none are reliably effective; no diagnostic test for AIED, try steroids = steroid responsiveness methotrexate BAHA, CROS hearing aid, assisted listening devices, pocket talker, cochlear implant Career counseling, family counseling, assisting with life changes Preserve hearing in the unaffected ear Palliative Care in Otolaryngology
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Managing Intractable Head and Neck Pain Abdel-Kader MehioM.D., Swapneel K. Shah,M.D. DERMATOMES
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Tips on Managing Head and Neck Pain Abdel-Kader Mehio M.D., Swapneel K. Shah,M.D.
Stepwise progression:
Anti-inflammatory meds (steroids) > pulsed radiofrequency> ablative procedures
“Intravenous rescue” = lidocaine infusion, magnesium infusion, metoclopramine infusion Regional blocks Physical therapy, acupuncture Refer to Pain Management Team Palliative Care in Otolaryngology
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Keep this in mind: Hippocrates said: “A physician should aim to cure, heal as often as possible, but comfort always”
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Conclusions
Palliative Medicine is a newly approved medical specialty Growing numbers of hospitals are now developing palliative care teams Principles of palliative care are applicable to the practice of otolaryngology Palliative care is not only for the dying patient at the end of life Palliative Care in Otolaryngology
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