Panel Discussion: Overcoming Barriers to Palliative Care in ...

CARING THROUGH THE END: CARING THROUGH THE END: Palliative Care Along the Continuum of CKDPalliative Care Along the Continuum of CKD

Panel Discussion:Panel Discussion:

Overcoming Barriers to Overcoming Barriers to Palliative Care in the Dialysis Palliative Care in the Dialysis

UnitUnitGeorge Kelly; Tony Messana; Erica Perry, MSW; Lesley George Kelly; Tony Messana; Erica Perry, MSW; Lesley Dinwiddie, MSN, RN, FNP, CNN; Michael Germain, M.D.; Dinwiddie, MSN, RN, FNP, CNN; Michael Germain, M.D.;

Karin Anderson-Barrett, RN, JD; Alvin Moss, M.D. Karin Anderson-Barrett, RN, JD; Alvin Moss, M.D. (Moderator)(Moderator)

The Patient’s PerspectiveThe Patient’s Perspective

George KellyGeorge KellyNational Kidney FoundationNational Kidney Foundation

Barriers to Palliative CareBarriers to Palliative Care

• Nurses feel that they are not trained or Nurses feel that they are not trained or don’t feel comfortable discussing end-don’t feel comfortable discussing end-of-life issues.of-life issues.

• Doctors don’t like discussing end-of-Doctors don’t like discussing end-of-life issues because it denotes having life issues because it denotes having lost the battle and perhaps even failure lost the battle and perhaps even failure on their part.on their part.

Barriers, cont.Barriers, cont.

• Social workers have new tasks, such as Social workers have new tasks, such as insurance and transportation forms, insurance and transportation forms, which limits their time with patients. which limits their time with patients. Many social workers also have two or Many social workers also have two or three units to visit.three units to visit.

Overcoming BarriersOvercoming Barriers

• In-service programs addressing how to In-service programs addressing how to discuss advance directives.discuss advance directives.

• Medical schools could develop a Medical schools could develop a program to help medical students deal program to help medical students deal more effectively with death.more effectively with death.

Overcoming Barriers, cont.Overcoming Barriers, cont.

• Social workers should be returned to Social workers should be returned to the role for which they were trained. the role for which they were trained. Social workers could be key in the Social workers could be key in the introduction of palliative care in the introduction of palliative care in the dialysis unit.dialysis unit.

Best PracticesBest Practices

• The best thing that I ever did was to The best thing that I ever did was to become a PEER MENTOR. I have been become a PEER MENTOR. I have been able to work with patients, introduce able to work with patients, introduce advance directives, and work with the advance directives, and work with the pre-CKD patient and family education pre-CKD patient and family education program. program.

The Administrator’s The Administrator’s PerspectivePerspective

Anthony MessanaAnthony MessanaNephrology Consulting & Management ServicesNephrology Consulting & Management Services

Barriers Barriers

• Multi-Disciplinary Team needs to Multi-Disciplinary Team needs to understand that it is not a failure but an understand that it is not a failure but an entitled patient choice.entitled patient choice.

• Staff education – understand how to Staff education – understand how to assist the patient in making the choice.assist the patient in making the choice.– Employee imposition of personal values. Employee imposition of personal values.

Ways to Overcome BarriersWays to Overcome Barriers

• Team EffortTeam Effort– Making “End of Life” an active part of Care Making “End of Life” an active part of Care

Planning.Planning.– Motivate team to make this an active choice. Motivate team to make this an active choice.

• Staff TrainingStaff Training– Social Work – primary. Social Work – primary. – Nursing and other support staff – secondary.Nursing and other support staff – secondary.

• Patient Education – make this part of the Patient Education – make this part of the educational process from the initiation of educational process from the initiation of treatment.treatment.


• Adult ProgramsAdult Programs– Included in Life Plans – active discussions from Included in Life Plans – active discussions from

initiation of dialysis and modality choice.initiation of dialysis and modality choice.– Discussions at critical junctures in the patient’s Discussions at critical junctures in the patient’s

life on viability or quality of life. life on viability or quality of life.

• Pediatrics – more complex – family decisions Pediatrics – more complex – family decisions and discussionsand discussions– Social Worker, Physician and Nursing together Social Worker, Physician and Nursing together

work with family to discuss options.work with family to discuss options.

Renal Professional Barriers Renal Professional Barriers regarding Palliative Care regarding Palliative Care

• ““I was trained to help people live, not to I was trained to help people live, not to help people die.” nephrologist quote.help people die.” nephrologist quote.

• ““Talking about dying with patients might Talking about dying with patients might promote choosing to stop dialysis promote choosing to stop dialysis prematurely.” nurse quote.prematurely.” nurse quote.

• ““It’s not my job.” dietitian quote.It’s not my job.” dietitian quote.• ““I don’t have the time it requires to do a I don’t have the time it requires to do a

good job talking about death with my good job talking about death with my patients.” social work quote.patients.” social work quote.

Medical Culture BarriersMedical Culture Barriers• There is less attention on patient dying and There is less attention on patient dying and

greater reliance on technology to solve greater reliance on technology to solve problems among dialysis population since it problems among dialysis population since it became funded by Medicare in 1972.became funded by Medicare in 1972.

• With little increase in Medicare With little increase in Medicare reimbursement rates and more demanded reimbursement rates and more demanded from smaller numbers of staff, more time is from smaller numbers of staff, more time is invested in meeting DOQI guidelines than in invested in meeting DOQI guidelines than in palliation discussions with patients and palliation discussions with patients and families. families.

• Renal teams do not set aside time to talk Renal teams do not set aside time to talk about palliation for their patients.about palliation for their patients.

Conceptual Barriers about Conceptual Barriers about DeathDeath

• Death is still considered a failure, a Death is still considered a failure, a tragedy, a potential lawsuit, a mistake, tragedy, a potential lawsuit, a mistake, evidence that all stones were not evidence that all stones were not looked under, all rabbits were not looked under, all rabbits were not pulled out of hats, unnatural, pulled out of hats, unnatural, devastating, something to be resigned devastating, something to be resigned to but not a source of job satisfaction:to but not a source of job satisfaction:

the ultimate enemy!the ultimate enemy!

The Social Worker’s The Social Worker’s PerspectivePerspective

Erica Perry, MSWErica Perry, MSWNational Kidney Foundation of Michigan, Inc.National Kidney Foundation of Michigan, Inc.

Overcoming BarriersOvercoming Barriers

• Mandatory discussions of renal patients who Mandatory discussions of renal patients who have died or are dwindling in roundshave died or are dwindling in rounds

• In-services in which Advance Directives and In-services in which Advance Directives and Stopping Dialysis are discussed with staffStopping Dialysis are discussed with staff

• QA projects which track AD discussion with QA projects which track AD discussion with patientspatients

• Protocols developed regarding honoring Protocols developed regarding honoring patients who die and how this will be patients who die and how this will be communicated to other patients.communicated to other patients.


• Ritualizing loss of patients through Ritualizing loss of patients through bereavement ceremonies, flowers on bereavement ceremonies, flowers on their dialysis chair, letter boxes for their dialysis chair, letter boxes for patients to write the patient’s family, patients to write the patient’s family, posting the obituary.posting the obituary.

• Policies that offer bereaved families the Policies that offer bereaved families the opportunity to come to meet with the opportunity to come to meet with the renal team and patients who knew the renal team and patients who knew the deceased.deceased.


• Short and long term care plans Short and long term care plans denoting a palliative care section.denoting a palliative care section.

• Required renal team visit to an Required renal team visit to an inpatient Hospice program. inpatient Hospice program.

• Required renal team visit to patients’ Required renal team visit to patients’ homes who have chosen to stop homes who have chosen to stop dialysis.dialysis.


• Pre-CKD patient and family education Pre-CKD patient and family education meetings in which peer mentors meetings in which peer mentors discuss the need to maintain control discuss the need to maintain control through Advance Directives.through Advance Directives.

• Five Wishes AD video required for all Five Wishes AD video required for all new staff orientation.new staff orientation.

• Protocol or critical pathway for Protocol or critical pathway for Enough’s Enough discussion with Enough’s Enough discussion with patients and inclusion of entire renal patients and inclusion of entire renal team.team.

The Nurse’s PerspectiveThe Nurse’s Perspective

Lesley Dinwiddie, MSN, RN, FNP, CNNLesley Dinwiddie, MSN, RN, FNP, CNNNephrology Nurse ConsultingNephrology Nurse Consulting

Barriers to ACPBarriers to ACP

• Lack of a formalized advance care Lack of a formalized advance care planning (ACP) process that assures planning (ACP) process that assures appropriate outcomesappropriate outcomes

• Lack of education for all patient care Lack of education for all patient care staff and lack of competencies for staff and lack of competencies for experienced staffexperienced staff

• Nursing staff perception “no time to Nursing staff perception “no time to talk” with patients talk” with patients andand “that’s the “that’s the social workers job”social workers job”

Patient barriers Patient barriers to discussionto discussion

• A difficult topic when their hope is for A difficult topic when their hope is for miraculous recovery of kidney function miraculous recovery of kidney function and resumption of a normal life – “I and resumption of a normal life – “I don’t come to dialysis to talk about don’t come to dialysis to talk about dying!”dying!”

• ““Talking about dying is giving up!”Talking about dying is giving up!”

• “ “My family will take care of it when the My family will take care of it when the time comes.”time comes.”


• 1. 1. PlanningPlanning::

– Make policy (as part of the administrative plan) Make policy (as part of the administrative plan) that that all all patients & families will be introduced to patients & families will be introduced to ACP as part of their admission process to renal ACP as part of their admission process to renal replacement therapyreplacement therapy

– Set up advance care planning (ACP) process as Set up advance care planning (ACP) process as part of long-term care planning with annual part of long-term care planning with annual updates (minimally) to affirm or amend the planupdates (minimally) to affirm or amend the plan

– Make ACP part of the routine CQI process and Make ACP part of the routine CQI process and give it the status of anemia managementgive it the status of anemia management


• 2. 2. Education:Education:– Offer sessions on end-of-life care using nursing Offer sessions on end-of-life care using nursing

guidelines (have PowerPoint slides available for guidelines (have PowerPoint slides available for educational meetings)educational meetings)

– Show that palliative care partners with Show that palliative care partners with recuperative care in the chronically ill recuperative care in the chronically ill population according to their risk factorspopulation according to their risk factors

– Highlight the educational resources available to Highlight the educational resources available to patient care staff such as EOL chapter in patient care staff such as EOL chapter in Contemporary NephrologyContemporary Nephrology NursingNursing plus recent plus recent nursing literaturenursing literature


• 3.3. Nursing Staff Time: Nursing Staff Time: – Teach the importance of end-of-life care to Teach the importance of end-of-life care to

encourage nurses to incorporate ACP as part of encourage nurses to incorporate ACP as part of their job responsibilitiestheir job responsibilities

– Utilize the collaborative team,using the CQI Utilize the collaborative team,using the CQI process, to help the staff understand that ACP is process, to help the staff understand that ACP is everybody’s responsibility even though the social everybody’s responsibility even though the social worker may take an appropriate leadership role!worker may take an appropriate leadership role!

Best Practice ExamplesBest Practice Examples• In-depth interview with patients to elicit In-depth interview with patients to elicit

their understanding of ACP with the goal of their understanding of ACP with the goal of demonstrating that this is standard of care demonstrating that this is standard of care (as per Colvin et al)(as per Colvin et al)

• Post an obituary or a family-approved Post an obituary or a family-approved announcement in the reception area with announcement in the reception area with flowers to announce a patient deathflowers to announce a patient death

• Offer the patients, staff, and family an Offer the patients, staff, and family an opportunity to meet and grieve the recently opportunity to meet and grieve the recently dead patientdead patient

Core Skills Core Skills

• The nephrology nurse should have The nephrology nurse should have multiple opportunities to initiate multiple opportunities to initiate discussion and provide guidance with discussion and provide guidance with decision-making over timedecision-making over time

• Collaborative team must incorporate Collaborative team must incorporate ACP into the overall care planACP into the overall care plan

Core ACP SkillsCore ACP Skills

• Initiate routine Initiate routine and urgent and urgent discussionsdiscussions

• Explore Explore understanding of understanding of renal disease renal disease progression progression

• Search out values of Search out values of living wellliving well

• Clarify statements Clarify statements

• Discover meaning of Discover meaning of experiencesexperiences

Core of ACP Skills, Core of ACP Skills, continuedcontinued

• Assist in Assist in understanding understanding ACPACP

• Explore barriers to Explore barriers to planningplanning

• Assist in selection Assist in selection and preparation of and preparation of proxyproxy

• Advocate for & Advocate for & communicate communicate patient wishespatient wishes

• Make referralsMake referrals

The Nephrologist’s The Nephrologist’s PerspectivePerspective

Michael Germain, MDMichael Germain, MDWestern New England Renal and Transplant Western New England Renal and Transplant

AssociatesAssociates

Barriers to Palliative Care in Barriers to Palliative Care in Dialysis-Lack of Dialysis-Lack of

Nephrologist’s SupportNephrologist’s Support• Lack of understanding of the principles of Lack of understanding of the principles of

Palliative care. Palliative care. Solution: didacticSolution: didactic lectures at lectures at grand rounds from national expertsgrand rounds from national experts

• Sense that they don’t have time. Solution: Sense that they don’t have time. Solution: role playing with common scenarios.role playing with common scenarios.

• Uncomfortable with discussing EOL issues Uncomfortable with discussing EOL issues with patient and family. Solution: Basic tips with patient and family. Solution: Basic tips in “ Breaking Bad News”in “ Breaking Bad News”

Barriers to Palliative Care in Barriers to Palliative Care in Dialysis-Lack of attention to Dialysis-Lack of attention to

Patient SymptomatologyPatient Symptomatology• Provide treatment algorithms during Provide treatment algorithms during

dialysis rounds in the order book.dialysis rounds in the order book.• If mid-level providers round on If mid-level providers round on

patients, have their focus be patients patients, have their focus be patients symptomssymptoms

• Make practitioners comfortable with Make practitioners comfortable with pain management principles, WHO pain management principles, WHO ladder, types of pain, dose ladder, types of pain, dose modifications in renal failuremodifications in renal failure

Barriers to Palliative Care in Barriers to Palliative Care in Dialysis-Advanced Directives Dialysis-Advanced Directives

UnderutilizedUnderutilized• Find a tool that your program is comfortable Find a tool that your program is comfortable

with (Five Wishes)with (Five Wishes)• Have physician give to patients during Have physician give to patients during

scheduled exam time or during roundsscheduled exam time or during rounds• Have pts view video tape for “Five Wishes”Have pts view video tape for “Five Wishes”• Have MD ask the patient to discuss the Have MD ask the patient to discuss the

document with their family and to return with document with their family and to return with the document next week. The following week the document next week. The following week ask if they had discussed and/or completed ask if they had discussed and/or completed the document and if they have questions.the document and if they have questions.

Barriers to Palliative Care in Barriers to Palliative Care in Dialysis-Low Hospice utilizationDialysis-Low Hospice utilization

• Have a meeting with your local hospice Have a meeting with your local hospice and find out if there are barriers from and find out if there are barriers from their end (CMS carrier policy etc)their end (CMS carrier policy etc)

• Find out how to make hospice referrals Find out how to make hospice referrals routineroutine

• Know how to discuss the role of Know how to discuss the role of hospice with patients and familyhospice with patients and family

• Educate nephrologists and staffEducate nephrologists and staff

The Legal Perspective The Legal Perspective

Karin Anderson-Barrett, RN, JDKarin Anderson-Barrett, RN, JDDialysis Clinic, Inc.Dialysis Clinic, Inc.

What is an Advance Directive?What is an Advance Directive?

““Intended to conclusively establish in Intended to conclusively establish in writing an writing an individual’s preferencesindividual’s preferences regarding the regarding the degree of medical care and degree of medical care and treatmenttreatment he or she desires to receive and he or she desires to receive and who should make these decisions if the who should make these decisions if the individual becomes incapacitated and individual becomes incapacitated and unable to make or communicate medical unable to make or communicate medical decisions.”decisions.”

-The National Kidney-The National Kidney FoundationFoundation

ESRD Patient PopulationESRD Patient Populationbenefits from making benefits from making

End of Life Decisions in Advance End of Life Decisions in Advance

• Elderly Elderly • Terminal Disease Terminal Disease • Shortened Life Expectancy Shortened Life Expectancy • Mental Incompetency (acute or permanent)Mental Incompetency (acute or permanent)

Advanced Care Planning is the processAdvanced Care Planning is the processof a patient making medical decisions in of a patient making medical decisions in advance and appointing others to make advance and appointing others to make medical decisions when the patient is medical decisions when the patient is unable.unable.

What are the Legal Barriers to What are the Legal Barriers to Providing Palliative Care in Providing Palliative Care in

Dialysis Units?Dialysis Units?

1. Absence of Patient’s Wishes in 1. Absence of Patient’s Wishes in the form of an Advance Directivethe form of an Advance Directive• Living Will – Written Document that instructs health Living Will – Written Document that instructs health

care providers regarding the medical treatments care providers regarding the medical treatments wanted or not wanted to prolong lifewanted or not wanted to prolong life

• Medical Care frequently identified as NOT wanted: Medical Care frequently identified as NOT wanted: dialysis, CPR, artificial nutrition/hydration, dialysis, CPR, artificial nutrition/hydration, ventilationventilation

• If no legal instructions to follow, how should the If no legal instructions to follow, how should the dialysis unit proceed to care for the incompetent dialysis unit proceed to care for the incompetent patient? patient? – No Consent to Treat No Consent to Treat – Withdraw Dialysis DecisionsWithdraw Dialysis Decisions– Pain ControlPain Control– What did patient want?What did patient want?

2. Absence of Patient’s Wishes – 2. Absence of Patient’s Wishes – Legally Designating a Decision Legally Designating a Decision Maker to Act on his/her behalfMaker to Act on his/her behalf

• Durable Power of Attorney for Health Care – Written Durable Power of Attorney for Health Care – Written document that appoints a surrogate to make document that appoints a surrogate to make decisions for patient should the patient lose the decisions for patient should the patient lose the ability to speak for himself ability to speak for himself

• If no one is appointed as the legal decision maker for If no one is appointed as the legal decision maker for this patient, how should the dialysis unit proceed to this patient, how should the dialysis unit proceed to care for the incompetent patient? care for the incompetent patient?

– No Consent to Treat No Consent to Treat – Withdraw Dialysis DecisionsWithdraw Dialysis Decisions– Pain ControlPain Control– What did patient want?What did patient want?

No Legal Decision MakerNo Legal Decision Maker

• Surrogacy StatutesSurrogacy Statutes– List of family members in order of priority to make List of family members in order of priority to make

medical decisionsmedical decisions– Vary from state to state – requires researchVary from state to state – requires research– Applies only in certain situations (withdrawal of Applies only in certain situations (withdrawal of

life support, in terminal condition per 2 MDs)life support, in terminal condition per 2 MDs)

• Dialysis Clinic to pursue Guardianship Dialysis Clinic to pursue Guardianship – No Available family members (absent, No Available family members (absent,

uncooperative)uncooperative)– Petition in State Court – appointed case managerPetition in State Court – appointed case manager– Financial Impact & Time ConsumingFinancial Impact & Time Consuming

3. Lack of Competency 3. Lack of Competency DeterminationDetermination

• Clinic’s Duty – obtain a competency Clinic’s Duty – obtain a competency determination when s/sx indicate patient lacks determination when s/sx indicate patient lacks capacity to make his/her own medical capacity to make his/her own medical decisionsdecisions

• Gradual changes in mental status – often Gradual changes in mental status – often competency and decision making not competency and decision making not addressed until there’s a crisis (hospitalization, addressed until there’s a crisis (hospitalization, combative behavior, s/sx of pain)combative behavior, s/sx of pain)

• Surrogate appointed at time of crisis – no Surrogate appointed at time of crisis – no preparation, no familiarity with medical preparation, no familiarity with medical condition, tough decisions requiredcondition, tough decisions required

4. Advance Directives Laws 4. Advance Directives Laws Vary in each StateVary in each State

Difficult for Dialysis Units to Analyze whether Difficult for Dialysis Units to Analyze whether an Advance Directive is Validan Advance Directive is Valid

• Execution Requirements (witnesses, notary)Execution Requirements (witnesses, notary)• Specific Language RequiredSpecific Language Required• Can AD be honored in another state?Can AD be honored in another state?• Is AD ever out of date? Is AD ever out of date? • Financial Impact and Time Consuming to Financial Impact and Time Consuming to

Analyze – lawyer needed at times Analyze – lawyer needed at times

Ways Dialysis Units Overcome Ways Dialysis Units Overcome Barriers to Providing Barriers to Providing

Palliative CarePalliative Care

• Partner with Organizations Partner with Organizations specializing in Education on specializing in Education on Advance DirectivesAdvance Directives– Hospital AssociationsHospital Associations– Nonprofit Organizations Nonprofit Organizations – Local Hospital and Hospice FacilitiesLocal Hospital and Hospice Facilities


Palliative CarePalliative Care• Education of Clinic staff and Education of Clinic staff and

managementmanagementthrough Training through Training – Focus: Patients’ right to make their own Focus: Patients’ right to make their own

medical decisions even when incompetentmedical decisions even when incompetent– dialysis unit’s duty to educate patientsdialysis unit’s duty to educate patients– liability for failing to honor ADliability for failing to honor AD– good faith protection for following ADgood faith protection for following AD


Palliative CarePalliative Care• Require Education of Patients through Require Education of Patients through

Advance Directives Policy – Advance Directives Policy – Comprehensive Approach required for:Comprehensive Approach required for:– Patient’s Admission – getting the patient Patient’s Admission – getting the patient

informationinformation– Patient’s Long term care plan – address Patient’s Long term care plan – address

individual medical condition, need for long individual medical condition, need for long term planning and decision making, educate term planning and decision making, educate individual on what Ads do and where to get individual on what Ads do and where to get formsforms


• Clinic’s Statistical Study of Advance Clinic’s Statistical Study of Advance Directives – increased completion rate Directives – increased completion rate from 20 % to 36%, then to 43% (6 mos.)from 20 % to 36%, then to 43% (6 mos.)

• Annual “Advance Directives” Day for Annual “Advance Directives” Day for educational purposes for patientseducational purposes for patients

• Patient’s Long term care plan Approach Patient’s Long term care plan Approach – includes 1-1 session with SW and – includes 1-1 session with SW and patient to discuss preferences and how patient to discuss preferences and how AD can accomplish those preferencesAD can accomplish those preferences

Summary of Overcoming Summary of Overcoming BarriersBarriers

• Need for someone in unit to assume responsibility Need for someone in unit to assume responsibility for coordinating PC effortfor coordinating PC effort

• Need a team approach with designated rolesNeed a team approach with designated roles• Assessment of pain/symptoms is first step to Assessment of pain/symptoms is first step to

improving pain/symptom managementimproving pain/symptom management• Advance care planning needs to be systematically Advance care planning needs to be systematically

incorporatedincorporated– During semi-annual care plan meeting with During semi-annual care plan meeting with

patient/familypatient/family– Assessment of decision-making capacityAssessment of decision-making capacity– Completion of advance directivesCompletion of advance directives– Health states in which pt would not want D, other Health states in which pt would not want D, other

LSTLST

Summary of Overcoming Summary of Overcoming BarriersBarriers

• Educational program for dialysis staffEducational program for dialysis staff– RPA-ASN resourcesRPA-ASN resources– ANNA resourcesANNA resources– ESRD 5 resourcesESRD 5 resources– RWJF report RWJF report

www.promotingexcellence.org/esrdwww.promotingexcellence.org/esrd– Core curriculum-AJKD Jan 2004Core curriculum-AJKD Jan 2004– Resources from this conferenceResources from this conference

Take-Home ApplicationsTake-Home Applications(A Systems-Theory Approach(A Systems-Theory Approach))

• What barriers exist in my unit?What barriers exist in my unit?• Which one would be the easiest to address Which one would be the easiest to address first?first?• What can I get done by next Tuesday?What can I get done by next Tuesday?• Institute review of quality of deaths in QIInstitute review of quality of deaths in QI• Appoint someone in unit to lead effort Appoint someone in unit to lead effort • What can I measure to assess effect of What can I measure to assess effect of intervention?intervention?

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