Putting the Patient and Family Voice Back into Measuring

Putting the Patient and FamilyVoice Back into Measuring theQuality of Care for the Dying

Toolkit of Instruments to MeasureEnd of life Care (TIME)

Research Team --Department of Community Health,Brown UniversityThe Picker InstituteCenter for Survey Research, University ofMassachusetts

Living Well With a Life Defining Illness

z Re-engineer AdvanceDirectives

z Change the Culture -Education

z Develop Measures ofand Demand Qualityof Care

z Create Systems ofCare that DeliverQuality Medical Care

What is so different about end-of-life care?

While one is dying,life takes on a newshape – valueschange. Things onceignored become moreimportant.What is more importantto this woman?Mammogram rates orbeing treated by thesame provider withcompassion.

Develop Measures

z If you don’t measure it..You won’t improve it!

z Essential to examiningthe quality of care forthe dying is both thedying persons and theirloved one voice

Role of Measurementz Clinical Assessment - measures to

guide patient managementz Research - assess phenomenon of

interestz Quality Improvement - information to

reform or shape how care is providedz Accountability - allows the

comparison of health care providers

Types of Measures

z Process measureProcess measure -- what you do to the patient--e.g..., Did the nurse ask about whether youhave pain?

zz Outcome measureOutcome measure - -- benefit to the patient --Didthe care you received at Hospice Care of RhodeIsland provide you with the desired level ofpain control?

Typical Satisfaction Measure

z Typical satisfaction measure asks aperson to rate a particular service on ascale of “Excellent to Poor” or choosefrom “very satisfied to very dissatisfied..”

z Requires a complex calculation of recall ofthat services, their expectation of thatservice, and then how to rank on thescale provided by that question

Satisfaction

z Corporations must become obsessed withlistening to consumers for “the race will go tothose who listen most intently (and respond).

Tom Peters

z I can’t get no satisfaction…I can’t get nosatisfaction…and I tried …and I tried… Thatwhat I say…No Satisfaction .. No.. No..

Jagger & Richards

z As I grow older, I pay less attention to what mensay. I just watch what they do.

Andrew Carnegie

Problems with Satisfaction(Rankings of the Quality of Care)

z Social desirability and acquiescencez Lowered expectationsz Skewed distributions -- everyone responds

“excellent”z Meaning of categories may not be

equidistant steps. “Very good” may be aproblem with “good” a major calamity.

Were you told thepurpose of youmedication in a wayyou could understand?

Reports Preferences or

Unmet NeedsRankings

Would you like someone tospend more time helping youeat?

Measuring the Dying Person and Their Loved Ones Perspective

Thinking about yourmedical care, howwould you rate theexplanation ofmedical tests?..Would you say..Excellent...

Patient Centered Reports

z What is important in palliative care? Key isresponsiveness to dying persons and their love onesexpectation and needs.

z Patient Centered Reports asks about specific events thatare important to medical care with questions phrased insuch a way to minimize patient’s expectations orpersonal relationship with health care providers. Forexample,

“Were you told of the purpose of your medication in a waythat you can understand?”

Historical Context

z “When I first met David Tasma, he was a Jew whohad lost his faith, a Pole who had lost his homeland,and ghetto survivor who had lost friends, family, andmaterial possessions. At the age of 40, he was dying.In the months that followed we talked again andagain about how the passage of end of life could bemade easier and by the time he died, the idea for St.Christopher’s Hospice had been born.. St.Christopher’s is now in its thirtieth year. We havenever lost sight of the values that were so importantto David: commitment to openness, openness tochallenge, and the absolute priority of patients’ ownviews on what they need.”

Dame Cicely Suanders

Patient Centered Reportsz Strong face/clinical validity - problem

areas are actionablez Focus is on consumer perspective-- and

not rates of CPR, days spent in ICU,etc. Heterogeneity - reasonable personmay desire different treatments.Preferences (and hence treatmentdecisions) are related to survival.

Vision for TOOLKIT

z Measures must be patient focused, family centered,clinically meaningful and manageable as well aspsychometrically valid, reliable, and responsive.

z Initial focus on quality improvement. In the future, withexperience..measures could be used for accountability,but accountability is a political process

z Measures must incorporate patient and familyperspective -- patient focused, family centered medicalcare

z Measures examine both the process as well as outcomes.Future research is needed to understandinterrelationship.

Overall Strategy For ToolkitOverall Strategy For Toolkit

z Conduct focus groups withdying persons and theirlove ones

z Review guidelines for keyprocesses of care

z Perform review of theevidence that these processresult in quality medicalcare

z Create both retrospectivefamily interview andprospective patientinterview

Overall Strategy For ToolkitOverall Strategy For Toolkit

z Core module that isapplicable across settingsof care

z Additional modules thatwould allow the user modifythe survey to their ownparticular needs

z Reports would come withresource guide that wouldsuggest next steps toimproving the quality ofcare

For every rate, there must be anumerator and a denominator

z For the past three decades, clinicalpractice and public policy there isrecognizable and definable state of being“terminally ill”

z Even with the best statistical models,uncertainty is inherent in thedetermination of prognosis

Is it time to terminate using theword “TERMINALLY ILL” ?

94 y/o with acute MI, low blood pressure, short of breath at rest…

Is she “terminally ill”?

ActiveTreatment

Dying

ComfortCare

The Concept of “Terminal Illness”

Life Threatening Illness Actively Dying

00

2020

4040

6060

8080

100100

12/1/97 3/1/98 6/1/98 9/1/98 12/1/98

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ion CHFCHF

CANCERCANCER

A Recommended Solutionz Guidelines on defining two states --

persons living with “life threateningillness” and those who are “activelydying”

z Interview bereaved family membersabout their perceptions of the quality ofmedical care

Why the Family?

z World HealthOrganization definespalliative care asobtaining the bestquality of life for thepatient and their lovedones

Role of the Familyz Medical care not

only impacts on the“patient”, but thefamily!

z For older and dyingpatients, a familymember may bethe only personsable to report on thequality of medicalcare

Family voice

"They kind of turned us over tohospice...there should have beenmore overlap between the healthcare team and hospice...I calledto tell (the doctor) that (thepatient) hadn’t eaten in 24hours… And (the patient) diedtwo hours later. The doctor saidhospice was in charge of hiscare… the hospice people didn’teven know us... we should havehad more information about whatwould happen when we gothome, both for symptoms andmedical care."

z 31 y/o mother caringfor actively dyinghusband who failedhis third BMtransplant and hertwo year old athome…

Focus Groups

Research Questions

z What do family members know about thequality of care of the dying?

z What time period(s) is the family able toreport on?

z What can they tell us about the last weekof life?

z How do family members reach conclusionsabout quality of care?

Settings of Care(AZ, MA, NY)

z Academic Health Centerz Hospicez Home Care with Visiting Nurse Servicez Nursing Homez Community Medical Center

Recruitment

z IRB approvalz Family members contacted 3 months to 1

year after the deathz All were contacted by mail and given the

opportunity of no further contactz Exclusions -- trauma, suicide, under 18

years of age

Recruitment

z Contact initiated by institution wheredeath took place

z Picker received a list of possibleparticipants

z Telephone recruitment using standardscript

z Confirmation letter -- telephone remindercall

The Focus Group SessionsFebruary -- May 1999

z Informed consentz Audiotaped and videotapedz demographic formsz 2 + hours

Focus Group Participants

z 42 participants in 6 groupsz 70% Caucasian, 17% African-American,

13% multi-racialz Mean age was 61 years (range 33-80)z 71% were womenz 88% had completed at least some college

Moderator’s Guide

z Let people tell their storiesz What does quality of life at the end of life

mean to you?z What do you think it meant to your loved

one in their final days?z What would they say about the care they

received at the end of life?

Post-group Evaluation

z Were you recruited for this study in asensitive manner?

z Was the focus group experience helpful toyou?

z Did the focus group experience cause youdistress?

What Did We Learn?

z Medical care must be patient-focused andfamily-centered

y provide the desired physical and emotionalcomfort

y promote shared medical decision-makingy treat each person as an individualy attend to the needs of those who care for

and love the dying person

Patient Focused, Family Centered Medical Care

Physical and Emotional

Comfort

Shared Decision-Making

Focus on the Individual

Attends to the Carers

Informing and Educating “you know what to expect, how you can help, and what you can expect.”

Coordination and Continuity of Care “but after a certain point, you wonder who’s in charge”

Physical Comfort

z “In terms of my husband,I know what was mostimportant to him was tobe free of pain. He wasbeing cared for if hewould not be in terriblepain.”

z “During those last days…the nurses would come inat least every 15minutes. They’d ask, iseverything okay? Do youneed anything? We’dpush the button, andthey would be there.”

Shared Decision-making

z “She said she didn’t wantany more operations.Now they wanted to go inbut they couldn’t cureher. We had all thesepeople coming to saythat maybe my motherwas mentallyincompetent -- sayingshe should have thesurgery.”

z Rhonda talking about herexperience with hermother’s treatment. Sheleft the hospital thatnight with the feelingthat she was “trying tokill” her mother by notconsenting to thesurgery.

Focus on the IndividualAchieving a sense of control

z “He had trouble speaking because his mouth was sodry. He wasn’t given adequate fluids. And this was aman, who my mother mentioned, bathed, got in and outof the bathtub everyday, shaved every day and brushedhis teeth meticulously. He had almost all his teeth andnobody gave him the materials to do oral hygiene. Hehad foul breath odor. No one helped him bathe and hecould bathe fine with all his props in place.”

z “She enjoyed being taken outside. The home healthaides didn’t do that. It helps. It helps anybody.”

Focus on the IndividualAchieving Closure

z “If there had been some way that he could not havebeen so incoherent, maybe he could havecommunicated with us a little bit. There is a way ifthey’ll take the time to allow the patient and family tocommunicate… if they’ll take the time to do that.”

z “And maybe if one of the nurses or the Rabbi could havecome to me and said, you have to realize she is going todie… I would have liked to have held her more. I wouldhave liked to have her die in my arms and that’s notwhat happened.”

Focus on the IndividualRespect and Compassion

z “He got very bad care. I have to say that the shavingand all those things that make you feel like a humanbeing and not one of the rejected and the lost, theydon’t do unless you force them in some way.”

z “Respect and dignity to me should be most and bestthat we can give anyone that is being dependent uponsomeone else to care for them. That was not given.For them to feel secure in their surroundings.”

Focus on the Individual-- NOT Factory Health Care

z My name is Ken. I’veexperienced bothcompassionate healthcareand also factory healthcareat various times, and Ithought if sharing myexperience could assist ininstitutions being morecompassionate, then thatwould be a positiveoutcome

z .. when I first went into thehospital with my mother it wasvery mechanical. It seemed tome the spiel they gave you. Theywent through this whole thing,because you are in a whole otheremotional state. And it seems likeit's a ritual, I was hearing it butI'm thinking, "My mother is dying.I'm hearing this outside persontelling me all these things….." I'mlike hello! I know they meant it,but it didn't sound like it, itsounded real routine.

Attend to the needs ofthose who care for the dying

With Ruth, I felt a strong sense of advocacy for her, and no, I’m not amedical person. Again, I have some common sense, and I do have aheart. Some of my questions used to be somewhat like well if youdon’t do that, what does that mean. I would make them answerbecause I think you’re right. You need to because sometimes theywould act hurried, and they would act rushed, and they would look attheir watch. I made a conscientious decision that I don’t really carewhat you have to do. It really is not my problem, and I’m sympatheticto everyone in this hospital, but my concern right now is this patienthere in this bed, and I would make them answer questions. I wouldcall them, and I would ask for pager numbers, and I would ask how Icould reach somebody. Sometimes it used to annoy me if I went to thenurse's station and they were busy, and they wouldn’t even look up,but I would say excuse me, excuse me, I have a question, or I needsome help with something


Advocacy as family burden --z “And you are there when she is calling the nurse and

the nurse doesn’t respond. And you are thinking if theyare not doing it while I’m here, being the advocate,what are they doing when I’m not here? And I wasthere most of the day, but I didn’t sleep there at night.”

z That’s the strongest word you’ve used. Everyone needsan advocate, no matter what your situation is. Wefound hospice was our advocate. I gave up fightingwhen hospice came in.”


Self efficacy --z “I’m glad I did it (keep her at home) but I think towards

the end…giving the medications and upping themedications seemed so fast. All of the sudden now sheis on all this morphine and all this whatever it is. Andthat kind of bothered me too. It really did. Because itwas like, my God, I’m giving her this stuff. Am I givingher too much? I’m not a trained medical person.”

z “I, being the caregiver, I was scared to death. I meanI’m not a nurse. I don’t have that experience.”


Trust and Confidence --

z “All we can do -- it’s like travelling in a foreign land--you know you take advice from people and decidewhether you trust them enough to follow it.”

z I visited my mother as least once a week. And now I’dsee her with oxygen and I’d say, what’s going on here?Why didn’t you call me?”


Support and emotional well-being --z “I was not prepared for how it actually went. I was not prepared

for my emotions. And afterwards, actually I did go to severalbereavement things. They were beneficial. I needed to vent.”

z “That last month though I knew she was going to die, I didn’t haveany feedback from ____. It would have been nice to have beenable to sit in a group like this.”

z “And possibly _____ could take a lesson from hospice and care forthose who are left behind.”

For the dying(and all persons)...

z Medical care must be patient-focused,family-centered.y Provide the desired physical and

emotional comforty Promote shared medical decision-makingy Focus on the individualy Attend to the needs of those who care and

love the dying person



Comfort








Comfort





Overall Score that is the sum of the rankings of the Overall Score that is the sum of the rankings of the quality of care in each of the key domainsquality of care in each of the key domains



Comfort






New Ranking QuestionsINTRODUCTION: In the next set of questions, I am going to read some statements to you on what (these health care institutions and) you should expect regarding the quality of medical care. Then, I will ask whether that goal was met by those health care providers involved in the medical care of (PATIENT) in the last month of life.

Important to high quality medical care is that the staff of (NAME of INSTITUTION) should --

Communicate with the patient and family so that they understand the (PATIENT’s) illness and likely outcomes of care.

.How well do you think that (NAME OF HEALTH CARE PROVIDER/ INSTITUTION) did in achieving this goal?) Choose a number on the scale of 0 to 10, where 0 is the communicationfailed to meet that expectation and 10 is greatly exceeded that expectation

CommunicationHospital(n=44)

6.5 (3.4)

Nursing Home(n=24)

6.6 (3.8)

VNA(n=11)

7.1 (4.1)

Hospice(n=17)

9.2 (2.1)

p= .04

(x) (sd)



Comfort





PhysicalPhysicalComfort Comfort ProblemProblem

ScoreScore

EmotionalEmotionalComfort Comfort ProblemProblem

Score Score

For each key domainFor each key domainthere is Problem Score (i.e.there is Problem Score (i.e.A count of the opportunitiesA count of the opportunitiesto improve based on unmetto improve based on unmetneeds or patient centered needs or patient centered

report)report)



Comfort

Self-DeterminedLife Closure





IN ADDITION, THERE WILL BE TWO CROSS IN ADDITION, THERE WILL BE TWO CROSS CUTTING PROBLEM SCORES FOR TWO KEYCUTTING PROBLEM SCORES FOR TWO KEY

PROCESSES OF CARE ACROSS THE PROCESSES OF CARE ACROSS THE FOUR KEY DOMAINSFOUR KEY DOMAINS



Comfort

Shared Decision-Shared Decision-

Making Making Focus on the Individual



Advance Care Planning Making decisions that reflect

patient preferences



Comfort


Focus on the Focus on the

IndividualIndividual Attends to the Carers

Achieving Sense of Control

Achieving Closure

Respect andCompassion

Spirituality/Transcendence

Personal Closure



Comfort


Attends to Attends to the the CarersCarers


TRUST/TRUST/CONFIDENCECONFIDENCE

EMOTIONALEMOTIONALSUPPORTSUPPORT

ADVOCACYADVOCACY

SELF-EFFICACYSELF-EFFICACYIN CARINGIN CARING

Proposed Content - - Physical and Emotional Comfort

z Assessment

z Education -- understand medications, use ofbreakthrough doses, side effects

z Timeliness of response to worsening pain

z desired level of relief

z ongoing monitoring and adjustment

z coordination

z appropriate referral

Physical Comfort

z Proposed questions --y While (PATIENT) was at _________, was there any

time when the medical staff did NOT do everythingthat they could to help control (PATIENT’S) pain?

y While (PATIENT) was at __________, did he/sheever have to wait too long for a pain medication tobe given to (him/her)?

y Did (PATIENT) receive too much, not enough, or theright amount of medicines to control (his/her) pain?

Proposed Content - -Shared Decision-Making

y Communication and education about prognosis,preferences, treatments options in a way the patientcould understand

y Understanding and listening to patients concerns

y Desired level of involvement in decision making

y Treatment preferences honored - problem is thesurrogate makes peace with these situations

y ACP= communication, formulation of preferences, anddevelopment of plans to honor those preferences

y Discussion of existing legal, written advance directives

Shared Decision-making

z Proposed questions --

y While (PATIENT) was at _____, did the doctor makea plan that ensured that (his/her) wishes for medicaltreatment were followed?

y At ______, was there any medical procedure ortreatment that happened to (PATIENT) that wasinconsistent with (his/her) previous wishes?


z Achieving a sense of control

z Achieving closurey personal relationshipsy spirituality/transcendence

z Respect and compassion

Proposed Content --Focus on the Individual

z Achieving sense of control

y as independent as wantedy attend to personal carey listening to what patient had to sayy respectful of choices about daily routine

Proposed Content - -Focus on the Individual

z Spirituality/Transcendence

y really listen to your fears, beliefs andconcerns

y appropriate referraly timeliness of that referraly interfere with the practice of those beliefs

Proposed Content - -Focus on the Individual

z Achieving Closure

y Time spent with loved oney Staff helping you communicate with loved oney Facilitate you being with your loved oney Able say important thingsy Staff not interfering in spending timey Staff not interfering in final goodbyey Comfortably being with persons


z Proposed questions --

y How often was the _____ staff respectful of(PATIENT’S) expressed wishes about his/her personalcare -- always, often, sometimes, rarely, or never?

y Did staff at _____ support (PATIENT) in being asindependent at (he/she) wanted?

y Was there anything that the staff did that interferedwith you saying your “final good-bye?”

Attend to the needs of those whocare for the dying person

z Advocacy -- feel responsible for good care

z Self-efficacy -- need more information

z Trust and confidence -- need clear answers

z Support -- need help to cope with the loss

Proposed Content--Attend to Carers

z Self-efficacyy manage medicationsy physical carey what to expecty know what to do at the time of deathy talking to the patient

Proposed Content--Attend to Carers

z Self-efficacy

INTRODUCTION: In the next set of questions we will beasking you about how much confidence you had in helping(PATIENT) manage (HIS/HER) health care needs? We willask you to rate your confidence on a scale of 0 to 10, where 0is not at all confident and 10 is very confident.

y How confident were you in your ability to knowwhat to do if (PATIENT’S) pain got worse?

Attend to the needs of those whocare for the dying person

z Proposed questions --y Would you have liked the staff to be more sensitive

to your feelings?

y Did a member of the staff talk with you about what itwould be like for you after (PATIENT’S) death?

y Would you have liked a member of the staff to callyou to see how you were doing after (PATIENT’S)death?

Individualize Survey toYour Needs

z Core questions that can be answeredabout medical care in hospital, hospice,VNA, and NH

Time Frames

z Past week for painand other symptoms

z For other domains,time frame is theamount of time underthat institution up toone month.

Proposed use of modulesz Additional question content in certain

domains - complete symptom assessmentin the last week of life

z site specific questions - self-efficacy forVNA and hospice, family burden

z Second survey that looks at care from theperspective of an integrated health caresystem (follow lead of mortalityfollowback)

www.www.chcrchcr.brown..brown.eduedu//pcocpcoc/toolkit./toolkit.htmhtm

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Putting the Patient and Family Voice Back into Measuring