8 Winter 2018

A 59-year old woman with colon cancermetastasized (spread) to the liver, pancreas,lung and brain presents to the ED with newonset of shortness of breath and abdominalpain. On exam she is in moderate respira-tory distress, lungs clear, tachypnic, tachy-cardic, mildly hypertensive, hypoxic, herabdomen is diffusely tender with a hard pal-pable mass. Her daughter is at her bedside.Per daughter, mom was feeling short-of-breath all day, and then fainted returningfrom the bathroom to bed; witnessed bydaughter, denies head trauma.

The ED physician orders the standardtreatment for the patient: labs; chest x-ray,C-T scan for possible pulmonary embolus;admit to ICU. -From a physician’shistory of a patient seen in the emer-gency department. (To be continued…)

IntroductionEvery day, a large proportion of

people with serious illness appear atthe emergency department (ED).Indeed, the ED has become a sort of“staging area” for these patients, i.e., it

is up to the physician to quickly diag-nose and determine whether thepatient is moved to more immediateaggressive care within the hospital, oris symptomatically treated and dis-charged.

Most EMTs know, first-hand, thedisastrous consequences a severely illor injured patient endures when he iskept alive with ventilators and feedingtubes, passed from one specialist tothe next. Those excruciating callswhere we witness the suffering of theseriously ill patient often cause us toquestion the wisdom of modernmedicine.

“My husband died in pain; no one elseshould anymore,” reads one recentheadline in an urban newspaper. Awife made an impassioned plea forstate legislation that would providemedications to assist patients to die.Her husband had had pancreaticcancer that necessitated a feedingtube to allow gastric juices to flow outof his stomach. She wrote: Before hepassed away, he was groaning, agitated, hisarms and legs would flail, and he was inpain – nothing made him comfortable. Hedied suffering and he deserved better.

In the past 15 years a new medicalspecialty has evolved in response tothis deleterious side effect of hightech medicine. It is called “palliativecare,” and its purpose is to provideseriously ill patients with the optionof symptom-directed medical care inplace of disease-directed treatmentswhose purpose is to cure.

This is not “giving up,” on a patient,but instead aims to decrease sufferingand restore peace and dignity to the

critically ill person in the time he hasleft.

In 2004, my daughter, Kate Aberger,became an emergency medical physi-cian. Eight years later, she left full-time ED work and began the practiceof palliative care. Here is the story ofher transition.

Fighting The “Battle”When Kate first began practicing in

an ED in north Jersey, she fought topreserve life for all patients, keepingthem alive and winning the “battle”with death. Physicians are healers,their life-saving practices based onscience-based evidence. There waslittle thought given to the process of“dying.” After several years, however,she began to founder, weighing whatshe had experienced in the ED withwhat seemed to her ethically wrong.

The most difficult patient…[wroteKate] was the chronically ill or terminally illpatient who came in extremis, usually from anursing home. Resuscitating them was tan-tamount to assault and battery on someonewho would not benefit at all from my inter-vention. When I asked the family if theywanted “everything done,” they said, ofcourse, yes. I failed to see the impossibility ofthe choice I had offered.

Night after night I persisted, with littlethought given to the future of those patients.I focused solely on getting them to the nextlevel of care: the ICU, the floor, surgery, CTscan, even back to the nursing home. I foundmyself rationalizing to assuage my guilt andhelplessness: “Let them sort it out.” “Thefamily will catch on sooner or later.” “I don’twant to take away hope.” “ Who am I todetermine when patients have crossed theimaginary line between life and death?” It

The Palliative Care Patient:Pursuing A Final Peace

by Julie Abergerby Julie Aberger

The Gold Cross CONTINUING EDUCATION SERIESThe Gold Cross CONTINUING EDUCATION SERIES

After reading this article, the EMT willbe able to:

• define palliative care and identify thetypes of patients for which it wasdeveloped;

• discuss important considerationswhen encountering palliative carepatients in the field;

• understand the composition and func-tions of palliative care teams;

• identify and understand the directivescontained in DNR and POLST forms.

After reading this article, the EMT willbe able to:

• define palliative care and identify thetypes of patients for which it wasdeveloped;

• discuss important considerationswhen encountering palliative carepatients in the field;

• understand the composition and func-tions of palliative care teams;

• identify and understand the directivescontained in DNR and POLST forms.

EMT ObjectivesEMT Objectives

9 Winter 2018

became a moral struggle: Is living at any cost“winning?”

Palliative care evolved out of thisethical dilemma: How do physicianstreat patients with serious chronic orterminal illnesses? Should all medicaltreatments be exhausted and life pro-longed in spite of futile prognoses?

Today I argue that people withserious illnesses are one of these pop-ulations that are chronically under-served, passed on from specialist tospecialist with few taking responsibil-ity for their medical dilemmas ashuman beings. Conversations aboutserious illness and death are one ofthese issues no one wants to dealwith. Instead of asking “Why us?” letus ask “If not us, then who?”

Why We Don’t “Give Up”…Why would a patient or her family

want to prolong painful treatmentswhen they’ve been told such treat-ments are futile?

Psychologically, some people have atendency to assume that a course oftreatment will succeed even when theoutcome is uncertain, a psychologicalstate called optimism bias (“The doctorsdon’t know just how stubborn Dadis.”) Others believe if they think posi-tively, their condition will improve, acondition called performative optimism(“I understand I may die…I guess Ihave to hope more.”) Others believein miracles, (“God’s not ready forMom yet.”) And some differ in theiropinions, (“ Fred’s looking betterevery day. He was lying there in acoma. Now he’s in there talking!”)

It’s not a simple misunderstandingbetween the patient and the physi-cian: People don’t understand badprognoses due to emotional and psy-chological mechanisms that must beaddressed.

Physicians’ OathPhysicians are bound by their pro-

fessional ethics to “Do No Harm,” butwhat does that actually mean? (Whilesome medical schools ask their grad-uates to abide by the HippocraticOath, others use a different pledge —or none at all.) The Oath states:

“The physician must be able to tell theantecedents, know the present, and foretellthe future — must mediate these things, andhave two special objects in view with regardto disease, namely, to do good or to do noharm.” There is no clear priority givento the avoidance of harm over the goalof providing help.

As high tech as our modern medi-cine has become, seriously ill patientsnow find themselves hopelesslyensnared in specialists, hospitals,tests, medicines, and treatments,while often not even understandingwhat’s wrong with them. Poor andconflicting communication betweenmultiple specialists and patient/family generates confusion; reconcil-ing differing reports is overwhelming.Very often patients and their familiesare unable emotionally to “take in”what the physician is saying. They donot understand the medical system orhow it works.

Kate described the painful realiza-tion of watching physicians deal withher father who was dying of a muscle-wasting disease that defied diagnosis.At an office visit, after years of care,his neurologist bluntly told the familythat he simply had no other treatmentoptions, and to contact hospice:

This doctor, like many of us, may havebeen driven by a sense of failure, fear ofdeath, powerlessness and impotence that wefeel in the face of serious illness and death.Instead of dealing with these emotions,physicians shut down and pass off thepatient to the next specialist. Besides, hemight have not been trained in the art ofhaving a conversation with a patient andfamily about serious illness and death. Ibelieve our medical system failed my father –no diagnosis, no treatment, and then aban-donment. [2011]

What Is Palliative Care andWho Is A Candidate?

According to the Center to AdvancePalliative Care: “Palliative medicine isspecialized medical care focusing onproviding relief for people living withserious illness. The goal is to improvequality of life for both the patient andthe caregivers.”

What are some medical conditionsthat palliative care treats? Serious ill-nesses include but are not limited to:

cancer, heart disease, lung disease,kidney disease, Alzheimer’s, amy-otrophic lateral sclerosis (ALS) andmany more.

But palliative care is not restricted toterminal patients; it is appropriate atany stage of serious illness, treatingthe patient’s symptoms of pain,depression, shortness-of-breath,

CEU Article: Palliative Care-continued from page 8

-continues on page 10

10 Winter 2018

fatigue, constipation, nausea, loss ofappetite, difficulty sleeping, andanxiety. In short , it improves thepatient’s quality of life by decreasingdebilitating symptoms.

Good palliative care comprises ateam – physicians, nurses, social

workers and chaplains – who meet allthe needs of the patient and hisfamily/caregivers. Specialists likeneurologists, urologists, cardiologists,pediatricians, etc., are now beingtaught to combine palliative treat-ment with their medical specialties,widening their scope of practice tocare for the patient not only duringserious illness, but beyond.

Palliative care is available in avariety of settings, including the hos-pital, outpatient clinic and at home.Most insurance plans, includingMedicare and Medicaid, cover itscosts.

P = PalliateWhat exactly does today’s palliative

care provide to those struggling withserious illness, or at the end of life?

Palliative care has a humanisticbend that sees beyond the patient’sdiagnosis and recognizes the wholeperson and his uniqueness. Thepatient is not “an MI,” or “a pancreaticCA,” or “a CVA.” The palliative careteam, operating within the limitationsof a diagnosis, devises “goals of care”that are a source of direction andsupport for the patient and his family.The team also provides the expertisein managing complex physical andemotional symptoms such as pain,shortness of breath, depression,nausea as well as spiritual help ifrequested. It is an ongoing processand the team follows the patient’scourse of disease, very often untildeath.

Andrew Thurston, MD [KevinMD.com], writes eloquently:

I’m a palliative care doctor, and the truthis this: I do have an agenda, but it’s not some-thing sinister or laced with deception. Mygoal is simple: to make sure we treat ourpatients as people. Not as “cancer” or “kid-ney failure” or “stroke” but as the unique,individual, storied people that they are.People with their own goals and values –people with their own definitions of what itmeans to live, even as they approach thatinfinite tunnel…This, to me, is the distilledessence of palliative care: patients as people.

Hope With RealismHow does a palliative care team ini-

tiate treatment? What does the

process look like? What is discussed?Some patients are conscious and ori-ented; others may be demented,obtunded or comatose. In that casetheir health care proxy representsthem, commonly a family member.The patient may be old, young oreven a newborn; obstetricians arenow integrating palliative care intotheir practices.

A member of the palliative careteam begins with a carefully scriptedconversation. [Italicized comments areremarks a palliative care team membermight make to the patient or his family.]Most use a method called ADAPT, a“talking map” to guide them throughcomplex, often emotional conversa-tions. It’s a series of guideposts thatmay or may not apply to all patients.(Understand that patients and fami-lies often need a great deal of repeti-tion to become comfortable and clearwith the process; often this process isnot linear.)

Before meeting the patient, theteam must have in place all thepatient’s necessary medical informa-tion and those involved in her care.They also establish a location to speakwith the patient that ensures privacy.Patient’s families or caregivers areinvited to be part of the process, if thepatient consents. If she has a POLST,an Advanced Directive or a LivingWill, the patient’s wishes are docu-mented unless, of course, the docu-ment is old. In that case, it is reviewedwith the patient and updated. (Seepages 12 and 13)

The conversation usually beginswith a question for the patient.

What have you understood from yourother doctors about your illness (cancer, con-gestive heart or kidney failure, etc.) so far?

In addressing a critical prognosis,the team must first know what thepatient knows. Anxiety and fear headthe list of causes why patients don’tunderstand their disease or its

CEU Article: Palliative Care-continued from page 9

Some patients may bedemented, obtunded orcomatose. In that casetheir health care proxy

represents them.

Some patients may bedemented, obtunded orcomatose. In that casetheir health care proxy

represents them.

progress, or simply deny it . Mostpeople have little understanding ofdisease or the human body. And alltoo often patients with “co-morbidi-ties” – e.g., diabetes, congestive heartfailure, COPD – have conflictingreports from individual specialistsand there is often a lack of coordina-tion in treatment.

If the patient doesn’t know or isunable to understand the criticalnature of his illness, the teammember gently informs her (and/orfamily members) in clear, simple sen-tences. Less is more: Lengthy expla-nations of a disease and its progressare avoided; palliative care recognizesthat often the patient/family is unableto take in too much information atonce.

The CT scan shows that the cancer isgetting worse.

The palliative team stops aftermaking the critical statement. Mostpatients have an immediate emo-tional response, for example, tears,anger, outrage, fear. The teamacknowledges that response withempathy:

I can see this news is not what you werehoping for. Everything is done to equipthe patient for the next step, that is,

thinking about the future, no matterhow limited the time.

Do you want to know the prognosis abouthow much longer you may have to live? Ifyou’re unsure, let’s talk about the pros andcons.

Most patients want to know “howlong?” Team members find thattalking about the future in terms ofevents, e.g., a wedding, a trip, a birth-day, is more useful than defining achronological time. Planning on

being present at a graduation or ananniversary, for example, mayprovide a more meaningful goal thanliving a number of weeks or months.Patients are often ambivalent abouttheir desire to know more, but theteam gives them (and their families) asmuch time and emotional space asthey need to absorb the information.

What are your goals? This does notmean winning the Indy 500 or flying

11Winter 2018

CEU Article: Palliative Care-continued from page 10

-continues on page 12

12 Winter 2018

There are several medical orders you and your crewmay encounter in the field. How do these documentsdiffer?

• An Advance Directive allows the patient to directwho will make health care decisions for him and to statehis wishes for medical treatment if he becomes unable todecide for himself in the future. His Advance Directive maybe used to accept or refuse any procedure or treatment,including life-sustaining treatment.

Anyone can fill out an Advance Directive in New Jerseyif he or she is 18 years or older and is able to make his orher own decisions. A lawyer is not required.

A patient should talk to his/her doctor about it and givethe doctor a copy. The patient should also give a copy tohis/her health care representative, family member orothers who are close to him/her. The patient can revoke orchange any of these documents at a later time.

New Jersey has two kinds of Advance Directives: a“Proxy Directive” and an “Instruction Directive.” It is thepatient’s decision whether to have both kinds or to justhave one of them.

Proxy Directive (Durable Power of Attorney for Healthcare)

A Proxy Directive is a document the patient uses toappoint a person to make healthcare decisions for him inthe event he becomes unable to make them himself. Thisdocument goes into effect whether the patient’s inabilityto make healthcare decisions is temporary because of anaccident or permanent because of a disease. The personthat the patient appoints is known as his “healthcare rep-resentative” and they are responsible for making thesame decisions the patient would have made under thecircumstances. If they are unable to determine what thepatient would want in a specific situation they are to basetheir decision on what they think is in the patient’s bestinterest.*

Instruction Directive (Living Will)

An Instruction Directive (See Figure 1) is a documentthe patient uses to tell his physician and family about thekinds of situations in which he would want – or not want– to have life-sustaining treatment in the event he isunable to make his own healthcare decisions. The patientcan also include a description of his beliefs, values, and

Sidebar: BLS and Palliative Care Patients

Figure 2: A New Jersey DNR Form, Front and Back

Figure 1: First page of an Instruction Directive

general care and treatment preferences. This is to guide hisphysician and family when they have to make healthcaredecisions for him in situations not specifically covered by hisAdvance Directive.*

- *NJDOH: “Advance Directive”

Do Not Resuscitate (DNR) FormA DNR, “Do Not Resuscitate” form (See Figure 2) is a

medical order that applies only to resuscitation measures forcardiopulmonary arrest. It does not address the need forintubation or other interventions. The document is notportable and only binding in the institution that issued it,such as the hospital where the patient is being treated. Onceshe leaves the hospital, the DNR is no longer valid at otherinstitutions; a new DNR must be issued.

Practitioner Orders for Life-SustainingTreatment (POLST) Form

In NJ, advance health care planning now offers POLST, or“Practit ioner Orders for Life-Sustaining Treatment.”(Practitioners are licensed physicians or advance practicenurse or APN.) This document is a set of medical orders thatgives seriously ill or frail elderly patients more control overtheir end-of-life care. And unlike a DNR, it retains its effec-tiveness wherever the patient goes, i.e., valid at an ED, allhospitals, nursing homes or the patient’s residence.

Produced on a distinctive green form (See Figure 3) andsigned by both the doctor/APN and patient/surrogate, POLSTspecifies the types of medical treatment that a patientwishes to receive toward the end of life. As a result, POLSTprevents unwanted or medically ineffective treatment,reduces patient and family suffering, and ensures thatpatients’ wishes are honored by healthcare professionals.

POLST is intended for those with terminal, progressiveillness and limited life expectancy. It is not indicated forhealthy persons. It does not replace the need for an AdvanceDirective that designates a legal healthcare decision maker.

POLST contains explicit directions about resuscitation forEMS providers in Section D: Whether to do CPR or not, andallow natural death. It also includes directions for airwaymanagement for a patient with a pulse in respiratory failure.For the medics, this section includes specific directionincluding Do Not Intubate orders, the use of O2 for non-inva-sive support, and medications for comfort.

The POLST document must be signed by the patient (orhis surrogate) and the health care practitioner (physician ornurse practitioner) for it to be valid. Crews should review thecontent of orders prior to initiating treatment. EMS shouldbring the POLST form with the patient to the hospital.

13Winter 2018

Figure 3: A New Jersey POLST Form, Front and Back

Unlike a DNR, a POLST retains its effectiveness wherever the

patient goes, i.e., valid at an ED, all hospitals, nursing homes or the patient’s residence.

Unlike a DNR, a POLST retains its effectiveness wherever the

patient goes, i.e., valid at an ED, all hospitals, nursing homes or the patient’s residence.

to the moon, but: What is important toyou to accomplish now?

• Medically: Do you want to continuecurative treatments? Do you want to con-tinue to treat symptoms that make yourdaily life intolerable such as nausea, vomit-ing, sleeplessness and pain?

• Emotionally: If time weren’t limitedwhat would be most important to you now?Do you want to see your grandson graduatefrom high school next spring? Do you wantto see your estranged son once more?

From the patient’s responses, thepalliative team works to create a plan,balancing hope with realistic goals.The dialogue continues with the pal-liative caregiver saying: I will do my bestto make sure you have what you need.

Or: Here’s what I can do now that willhelp you do those important things. What doyou think about it?

If the patient is unclear or uncer-tain what he should do, the teammember then seeks to identify theissues with more short questionssuch as:

Tell me more about… Rather thanassume what the patient’s issue is, theteam member probes with a differenttype question.

Other questions that might elicitmore direction from the patientinclude:

What do you think about…?

Could you say more about what youmean when you say that…?

Does that make sense?A s I listen to you, it sounds the most

important things are [x, y, z]. The patientis frequently reminded that he is notalone, that the team is working withhim, balancing his hopes with thefacts and reality of his prognosis.

More VoicesPalliative care also extends to

patients who are unable to make theirown decisions, e.g., the patient who isseriously ill and has dementia or isunconscious, or is a child or baby.Then the patient’s caregivers – e.g.,family, friends – are invited to meetwith the palliative care team. The nar-rative is similar to the patient-cen-tered conversation, but obviously,there are many more voices. Forinstance, a patient’s adult childrenmay all appear together with thepatient’s siblings, and the team ischallenged with listening and speak-ing with many people at once.

During a group meeting, after intro-ductions, each person has an oppor-tunity to talk about the relationshipthey have with the patient. The pallia-tive care team member then explainsthe most current information aboutthe patient’s medical condition, againin short, concise sentences. Then,highlighting the patient’s voice, theteam member asks:

If [patient’s name] could speak, what doyou think she would say?

The palliative care team memberlistens and then, together with thefamily, devise a plan based on whatthey believe the patient would havewanted. Often there is conflict within

the family, and heated discussionsoften ensue. But consensus is alwayssought.

The palliative care process is morethan one meeting, or one conversa-tion. It is ongoing; the team stays withthe patient throughout, very oftenuntil the time of death. If they chose,patients and families are never left toface difficulties alone. The patient iskept comfortable, e.g., out of pain,often through hospice services.

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CEU Article: Palliative Care-continued from page 11

From the patient’sresponses, the palliativeteam works to create aplan, balancing hopewith realistic goals.

From the patient’sresponses, the palliativeteam works to create aplan, balancing hopewith realistic goals.

-continues on page 15

HospiceHospice can be an important part

of palliative care. Its services aredesigned to meet the needs of peoplewhen their life expectancy is sixmonths or less. Care involves a team-oriented approach to medical care,pain management as well as emo-tional and spiritual support. At thecenter of hospice and palliative care is thebelief that each of us has the right to diepain-free and with dignity, and that ourfamilies will receive the necessary support toallow us to do so. (National Hospice andPalliative Care Association)

Hospice focuses on caring, notcuring, and in most cases, care occursat home, although hospice servicesare also available at most hospitals andnursing homes. Hospice staff – physi-cians, nurses, home health aides,social worker, etc. – provides the nec-essary medical supplies, and drugs tokeep the patient comfortable. Theycoach the family on caring for thepatient, and are on-call 24/7. Their ser-vices usually extend six months.

Palliative Care for Our Patient(Continued from above… )How will the ED physician use pal-

liative care to treat our 59-year oldmother with metastatic cancer? Thephysician’s history of the patient con-tinues:

First, the symptoms of pain, nausea andvomiting are brought under control withmedications. The patient suffers constantlyfrom abdominal pain and has been pre-scribed both long- and short-acting mor-phine; however, on further questioning, sheadmits she is not taking any opiates, andonly an occasional Tylenol because she “doesnot want to feel drugged.” The patient isessentially opiate naïve, therefore, I gave her5mg of morphine, 4mg ondanse tteron[antinausea] and 25mg Benadryl. After ahalf an hour, the patient is resting comfort-ably, and able to walk with assistance to thebathroom. Her vital signs have normalized;her chest x-ray and labs as well.

Second, with these results, goals of care arediscussed with the patient and her daughter.Further history reveals the patient hadextensive chemotherapy and radiation, mostrecently whole brain radiation that shrank

the tumor foci briefly. But a recent repeatscan of the brain shows a recurrence. Heroncologist stated there are no furtherchemotherapy options, but discussed possi-ble experimental treatment.

The ConversationNow that the patient is comfortable, and

the daughter is less anxious, the doctor sitsdown with them.

“What do you think is going on with yourcancer?” she asks the patient gently.

“I think I am in the final stage, I think Iam dying,” the patient replies. For a minute,the physician says nothing, allowing thewoman’s words to resonate.

“ I think you are right,” the doctor thenresponds. “If conditions were ideal, wherewould you want to be?”

“Home,” the woman says without hesita-tion and her daughter agrees. From a 10-year old Advance Directive the patient hadfilled out before she became ill, the doctor

15 Winter 2018

CEU Article: Palliative Care-continued from page 14

-continues on page 16

reads out loud: “No machines, no heroics, noexperimental treatments.” The patient nods,reaffirming her wishes.

The doctor explains that a likely cause forher shortness of breath is the fact that she isnot treating her pain adequately and tryingto endure it without meds. Another worri-some possibility is a blood clot in the lung(pulmonary embolus).

They discuss the possibility of a CT scan forpulmonary emboli, but when the doctorexplains to the patient and her daughter thatits result will not change the management orthe outcome, they agree it should not be done.(Anticoagulants are contraindicated in meta-static cancer.) Since the doctor is able to controlher symptoms with a small dose of morphine,she is confident that with coaching, the daugh-ter will be able to give it orally at home.

How best to honor this patient’swishes to go home?

“The best way to get you home is to usehospice service,” the doctor says, explainingjust what hospice is, what it does and doesn’tdo. In her case, she has a primary caregiver –

her daughter – and symptoms that can becontrolled with oral meds. Hospice providesall the medical equipment they need, includ-ing medications. There is a hospice nurse oncall 24/7; home health aides that comeweekly as well as social w orkers andbereavement services. They will allow herand her family to make the most of the timeshe has left.

The patient and daughter readily agree.The physician calls the local hospice agency,and they arrange to meet the family andpatient at home later that day. Finally, thephysician says goodbye and the patient isdischarged to her home.

In the End…Palliative caregivers are skilled com-

municators: they listen carefully,speak only when needed, gently prod-

ding or proposing alternative options.The treatment they prescribe – be itsymptom-directed or disease-directed– wholly respects the choices thepatient and/or his family has made.

As a palliative care physician, mydaughter has been thanked, blessed,cursed, reviled and sternly orderedout of the patient’s room. In spite ofthe circumstances, she finds greatmeaning in her work. She has prayedwith patients, laughed, cried, heldhands, given hugs and sat by themwhen they drew their last breath,privileged to be in their presence.

Julie Aberger is an EMT instructor andan active member of the Pennington FirstAid Squad. Julie is also the editor emeritaof The Gold Cross.

16 Winter 2018

Hospice focuses on caring, not curing,

and in most cases, care occurs at home.

Hospice focuses on caring, not curing,

and in most cases, care occurs at home.

CEU Article: Palliative Care-continued from page 15

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