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Resident Rights vs. Regulatory Issues: Managing Health Care Decision Making and Personal
Preferences - Who Decides?
2017
Presented bySean FaheyAttorney
Hall, Render, Killian, Heath & Lyman, P.C.
Disclosure of Commercial InterestsI have commercial interests in the following organization(s): (or I consult for the following organizations)Health Law and Estate Planning Attorney at Hall Render Killian Heath & Lyman, P.C.
List the Name of Your Employer: ‐ Attorney‐ Hall Render Killian Heath & Lyman, P.C.Indianapolis, IN 46204www.hallrender.com‐ What the company does? ‐ Advise health care institutions on legal matters.If consultant for organizations, only list the names of the companies for which you consult.‐List all commercial interests. Note if you are employed by a company, you have a commercial interest in that company.Hall Render Killian Heath & Lyman, P.C.Indianapolis, IN 46204www.hallrender.com‐If you are not employed, do not consult for anyone, and have no financial investments in organizations in the health care industry, then you may state that you “have no commercial interests.”
What will we cover?
• New Regs
• Eggs
• Smoking
• Coffee
• Refusing Treatment
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Background
• Residents of nursing facilities have all the same rights as any other citizen or resident. The right to make health care, financial and personal decisions are not relinquished upon admission.
• Situation is more difficult to navigate when the resident has physical or mental impairments.
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Background
• Federal requirements for Medicaid and Medicare nursing facilities provide that the resident has a right to a dignified existence and to self‐determination.
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New Requirements of Participation (ROPs)…How Did We Get Here?
• First significant update since 1991.
• Almost 10,000 comments received by stakeholders in the industry.
• Goals.
– Person‐Centered Care.
– Facility Assessment.
– Implementation of ACA Provisions.
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RESIDENT RIGHTS - 42 CFR 483.10• Implementation in Phase 2.
• No resident rights removed; only expanded.
– Many new requirements add details to/expansion of old requirements.
– Structure ‐ CMS details the right, then follows up with facility requirements that support that right.
• Exercise of Rights:
‐ Facility must support the resident's exercise of rights.
‐ Resident Representatives ‐ may be formal (POA) or informal (friend)
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RESIDENT RIGHTS - 42 CFR 483.10• Even if resident has a guardian, resident is still entitled to
make decisions insofar as he/she is capable of doing so.
• Legal representatives trump informal rep.
• Limits:
‐ May only exercise rights delegated to them;
‐ Resident retains rights not otherwise delegated;
‐ Representative must consider resident's wishes and preferences; and
‐ Same sex and opposite sex spouses treated same as long as marriage is valid in state where celebrated.
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RESIDENT RIGHTS - 42 CFR 483.10• Care Planning ‐ resident has the right to:
‐ Participate in care planning to the extent possible;
‐ Be informed, in advance, of care plan changes;.
‐ Receive services identified in the plan;
‐ Review plan and sign off on significant changes;
‐ Be informed, in advance, of who will provide care;
‐ Be educated by physician/other professional on the risks and benefits of proposed care;
‐ Be informed of, and able to choose, alternative options and treatments‐ so long as medically necessary, appropriate; and
‐ Request/refuse medical treatment.
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RESIDENT RIGHTS - 42 CFR 483.10• Care planning ‐ resident has the right to:
‐ Have advance directives; and
‐ Self‐administer medications (as clinically appro).
• Choice of Attending Physician:
‐Must be licensed to practice medicine.
‐ Must meet facility requirements.
• Facility may choose an alternate if choice cannot/will not meet regulatory or facility requirements.
• Facility must inform resident and honor preferences.
• Must inform resident of physician's name, specialty and contact info.
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RESIDENT RIGHTS - 42 CFR 483.10• Respect and Dignity:
‐ Resident has the right to be treated with respect and dignity.
‐ Only two new additions to this section:
• Right to have roommate of choice, when practicable .
(1) As long as both residents reside in the same facility; and (2) both consent.
• Right to refuse transfer to another room, if the purpose is solely for the convenience of staff.
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RESIDENT RIGHTS - 42 CFR 483.10• Self‐Determination:
‐ Facility must promote and facilitate resident self‐determination.
‐ Resident has the right to choose sleeping and waking times, and every other aspects of their schedules and activities.
‐ Resident has the right to have visitors of their choice, whenever they want, as long as it does not interfere with rights of other residents.
‐‐ Facility must allow immediate access to any representative of LTC Ombudsman, disability advocacy agency, mental illness advocacy agency.
‐‐ Immediate access for the resident rep.
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RESIDENT RIGHTS - 42 CFR 483.10• Funds
‐ Right to manage financial affairs.
‐ If resident deposits funds with the facility, the facility must act as a fiduciary of those funds.
‐ Rules for when resident funds must go into an interest bearing account are different for Medicaid and non‐Medicaid residents.
• Non‐Medicaid: personal funds in excess of $100.
• Medicaid: remains at the old amount of $50.
‐ Rule for conveyances upon death now also include discharge and eviction.
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RESIDENT RIGHTS - 42 CFR 483.10• Allowable Charges:
‐ Hospice services under Medicare hospice benefit added to services facility may not charge Medicare/Medicaid residents.
‐ May charge residents for items and services if requested, not required to achieve goals in the resident's care plan.
‐ Language added on cell phones, computers, and eletronics. ‐ May not charge for special foods ordered by resident's
health care provider.
‐ When preparing meals must take into account resident needs and preferences AND culture and religious make up of the
resident population.
• ‐ If charging, must inform resident orally & in writing..14
RESIDENT RIGHTS - 42 CFR 483.10• Information and Communication:
‐ Medical records requirements:
• Must be produced in form and format requested.
• Format includes electronic if facility uses EHR.
• Must be in a readable format.
• May charge a fee for copying records requested. Can only include labor, supplies, and postage.
‐ When providing information to a resident, must be provided in a form/manner that is accessible and understandable to a resident.
• Includes alternative formats and other
languages.15
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RESIDENT RIGHTS - 42 CFR 483.10• Contact Info: * = new
‐ Must provide contact info for the following entities:
• State regulatory and informational agencies.
• Resident advocacy groups, such as State Survey Agency.
• State licensure office.
• State Long‐Term Care Ombudsman.
• The protection and advocacy agency.
• Adult protective services if have nursing home jurisdiction.*
• The local contact agency for information about returning to the community.*
• Medicaid fraud control unit.16
RESIDENT RIGHTS - 42 CFR 483.10• Contact Info: * = new
‐ Must provide notice/statement that resident can file complaint with state survey agency about:
• Any suspected violation of state or federal nursing home regulations.*
• Resident abuse, neglect, exploitation and misappropriation.
• Non‐compliance with advance directives.
• Requests for information regarding returning to the
community.*
‐ Must provide contact information for above for
filing complaints listed above.17
RESIDENT RIGHTS - 42 CFR 483.10• Charges * = new
‐ Facility must inform residents in writing, 60 days in advance, of any changes to charges for facility items or services. This includes increases in base room rates.
‐ If resident leaves the facility (for good), facility must:
• Refund any deposit or charges already paid, minus the
facility's per diem rate.
• Refunds must be made within 30 days.
• Admission contract terms must comply with regulatory
requirements.
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RESIDENT RIGHTS - 42 CFR 483.10• Privacy and Confidentiality:
‐ Resident has right to privacy.
‐ Resident has right to secure and confidential personal and
medical records (Ombudsman notification requirement may be at odds ‐ guidance pending)
‐ Facility must respect personal privacy, including:
• Spoken, written and electronic communications.
• Mail, packages and other materials delivered to facility.
‐ Facility must allow representatives of State Long‐Term Care Ombudsman to examine resident's medical, social and administrative records.
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RESIDENT RIGHTS - 42 CFR 483.10• Safe Environment:
‐ Moved over from Quality of Life section.
‐ Emphasis on safety:
• Environment that allows safe treatment and services for daily living.
• Physical layout maximizes independence and does not pose safety risk.
• Reasonable care to protect the safety of resident property.
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RESIDENT RIGHTS - 42 CFR 483.10• Grievances:
– Resident right to voice grievances without fear of discrimination or reprisal.
‐ Grievance Policy Requirements:
• Notification of residents individually or in prominent postings of:
‐ Right to file grievances orally or in writing.
‐ Right to file anonymously.
‐ Contact info of grievance officer
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RESIDENT RIGHTS - 42 CFR 483.10• Grievances:
‐ Expected time frame for grievance review.
‐ Right to a written decision on grievance.
‐ Contact info on independent entities with whom to file grievances.
• Pertinent State agencies.
• State quality improvement organization.
• State survey agency.
• Ombudsman.
• Protection and advocacy system.
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RESIDENT RIGHTS - RECAP• RECAP:
– Resident’s rep only has authority from court or document.
– Same sex couples rights, same as opposite sex couples.
– Grievances – establish policy and notification requirements.
– Physician choice, but must meet regulatory requirements.
– Room change notices now in writing.
• Action Items:
– Update or create new policy and procedure for:
• Grievance policy and create grievance system.
• Room changes and sharing.
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Nursing Facility Obligations
• Provide care and services to attain/maintain
highest level of well‐being
• Provide supervision to prevent accidents
• Environment free of accident hazards as
possible
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Balance• Exercise Right to Reject:
• Treatment
• Assistive Devices
• Supervision
• Leads to :
• Decline in Condition
• Accidents
• Injuries
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Capacity and Authority for Decisions• Presumption of capacity• Resident can delegate decision making per state law
• ‐ General and Durable Powers of Attorney• ‐ Healthcare Powers of Attorney• State law determines if general or durable POA covers health care decisions
• Court appointed guardians can make all decisions
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Capacity and Consent
• Mental Capacity often unclear• Can worsen and then improve• Some decisions are easy, some too complex• Lack of capacity• = lack of consent• Lack of consent• = potential claims, recoupments, sanctions
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Non‐Healthcare Decisions
• Healthcare POAs do not cover non‐healthdecisions• If no guardian or POA, issues arise if familymembers do not agree with resident choice• Intimate relationships, smoking, hygiene• Documented assessment of residentcapacity and bases for conclusions help
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Assessment
• Assessments• Performed by experienced health professional• Evaluate resident’s ability to:• understand choices, pros and cons,• make decision based on them, and• remember and act on decision• Involve treating physician to reduce secondguessing• Document in clinical record
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Eggs
• During state survey inspection• Five residents observed eating runnyeggs for breakfast• Eggs served per resident request
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CMS• IJ s/s “K” under F tag 371• $5,000 CMP• Surveyors claimed the runny eggs notproperly cooked and unsafe to eat• Eggs must meet both the (1) time and temperature requirement and (2) be congealed (i.e., not runny)
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Review
• Upheld IJ and penalty (affirmed by DAB)• Insufficient evidence the eggs were cooked to a temperature of at least 145 degrees in all parts of the egg for at least 15 seconds
• CMS’s October 2004 Regional Survey and• Clarification Letter:• “Soft‐cooked eggs deemed undercooked if the yolk is runny and/or the egg white is not congealed”
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Courts
• 2013 Decision:• Overturned ALJ/DAB Decisions and IJ/CMP• Was in substantial compliance with F 371• Dietary Expert Video evidence confirmed time and temperature cooking standard met
• CMS Regulations ambiguous as to whether eggs had to meet time/temperature requirement and not be runny
• Result: Resident food choice upheld
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Rights vs. Safety• Facility not required to serve congealed eggs,
against resident choice• Absent clear regulatory standards to the contrary, a resident’s dietary choice must be honored if it does not involve contaminated or unsanitary food
• The facility took reasonable interventions to serve the soft cooked eggs safely ‐ no resident became ill from eating the runny eggs
• Resident informed decision making consent
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• If eggs are served undercooked (soft‐cookedor sunny‐side up), pasteurized eggs must beused• If unpasteurized eggs are used, they mustbe cooked until both the yolk and white arecompletely firm and served immediately• Time and temperature test not used
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2014 New CMS SOM Guidance
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Voluntary Leave/Elopement Case
• Not in substantial compliance with F‐324 (42 C.F.R.§483.25(h)(2)) at an IJ level
• $6,300.00 CMP
• Surveyors found an elopement because
resident 9 wandering from the facility without adequate supervision or safeguards in place
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Facility Response
• Treating physician placed no restrictions on resident 9 signing out of the facility with another person
• Everyone knew “Linda,” the “couple” went out together all the time and resident 9 was always happy upon his return (incident/injury was not reasonably foreseeable)
• Resident 9 (and Linda) did not use sign out sheet (because of the wife)
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Facility Response
• Receptionist monitors door• Nurses station directly in front of door• Security system requiring code to unlock door• Sign: “do not let resident out the door” • Sign out log• One hour monitoring for residents with wandering tendencies.
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ALJ
• ALJ upheld the cited deficiency at an IJ scope and severity and the CMP
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Resident Rights vs. Safety Concerns
• Resident rights directly conflicted with safety and rights lost.
• Safety prevailed over the resident’s right to leave the facility, regardless of characterization as voluntarily or elopement.
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• 52 year old male resident,
‐ History of Debility, Depression, Anxiety, Seizure, Mild Cognitive Impairment,
‐ Lit cigarette and 6 inch beard, then shirt caught fire
• Causing chest and facial burns
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Smoking
Facility
• Facility Response
• Staff extinguished fire
• Resident sent to ER for evaluation
• Facility Investigation Initiated
• Reported to state
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Facility Investigation Findings
• Resident independent in decision making
• Some history of noncompliance
• Deemed a safe smoker after showing
compliance progress
• Resident complied with safe smoking
protocols while smoking
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Smoking Policy Followed
• Resident has right to smoke
• Designated outdoor smoking area
• Supervised smoking
• Smoking Tobacco Acknowledgement
• Evaluation upon admission, quarterly and annually for change in condition
• Portable fire extinguisher/smoking
blanket
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Additional Measures
• Products and paraphernalia kept by staff
• Staff lights cigarette for resident
• Education and training
• Smoking apron
• Encourage trimming of long beards
• Resident room checks if hoarding paraphernalia
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State Investigation
• Staff followed facility smoking policy
• Precautions taken ensuring resident safety while honoring right to smoke
• No regulatory violations substantiated or cited
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Rights vs. Safety
• Facility successfully negotiated between:
• a resident’s right to smoke and
• the obligation to ensure residents are in a safe environment
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Coffee
• 100s of cups poured daily
• 4 spills over 7 months
• 1 during breakfast in bed
• 3 in dining room at breakfast
• chair bumped while taking sip
• picked up mug wrong & lost grip
• hit mug while reaching for something
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Coffee 1
• 63 years old, wheelchair
• Parkinson’s, no tremors
• Eats, drinks without assistance
• No deficits in decision making or communication
• Reported spilled on thigh during breakfast/bed
• Said had right to hot coffee even in NF, could happen anywhere
• “I’m pretty sloppy and not afraid of a spill or I
wouldn’t drink it”
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Coffee 2
• Wheelchair
• Some dementia, short term memory deficits
• Mental function steady through the day
• Supervised, cued, encouraged at meals
• Coffee served at his table
• Picked up mug wrong, lost grip, spilled
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Coffee 3
• Wheelchair
• Dementia with short term deficits
• Poor decision making (clothes, when to eat)
• No trouble communicating
• Ate independently, coffee served at her table
• Hit mug reaching for something else
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Coffee 4
• Wheelchair
• Moderately impaired in decision‐making
• Could answer yes/no, but no conversations
• Ate independently with cueing, supervision and setup
• Coffee served at table
• Wheelchair bumped while taking a sip
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Coffee 4
• Wheelchair
• Moderately impaired in decision‐making
• Could answer yes/no, but no conversations
• Ate independently with cueing, supervision and setup
• Coffee served at table
• Wheelchair bumped while taking a sip
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CMS Coffee• IJ and scope and severity “K” under 6 tags
• Should have done assessment for risk of hot
liquid spills for residents with decreased:
• ‐ Cognition or dementia
• ‐ Skin thickness or sensitivity
• ‐ Agility or mobility
• ‐ Peripheral neuropathy
• ‐ Ability to communicate
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Facility
• Dementia not a factor• Residents know coffee burns if spilled (40+years experience)• No findings of decreased skin thickness orsensitivity• Same result without coffee• No findings of neuropathy in hands• All communicated effectively
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Facility 2
• Risk of burns is the same that all coffeedrinkers face and accept• Coffee spillers continue to drink it• Risk is foreseeable and accepted• 4 isolated burns over 7 months in populationof heavy coffee drinkers is low
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Prevention
• Continuation assessment of capabilities and needs
• Ample dining room supervision• Served while seated at table if unable toreach coffee dispenser• Easy to handle mugs, wide base, large handles• Filled 2/3 full• Alzheimer's Wing: no direct access, coolingand cues
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Other Adjustments
• Tried and Discontinued
• Sippy‐type cups ‐ coffee stayed too hot for too
long and had unfamiliar handles
• Decreased temperature – resident uproar
ALJ• Sustained IJs and penalty
• Because residents had some degree of
physical or cognitive impairment, should
have done hot liquid assessments
• Assessments that demonstrate physical and cognitive ability to handle safely do not count unless they are specific to hot liquids
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Rights vs. Safety• Safety concerns trump resident rights
• No amount of supervision or assistive device
can prevent spill and burns from dropped
cup
• Use hot liquid safety screens
• Only way to prevent spill burns is to cool to
the point it cannot burn skin
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Refusal of Treatment OrdersUse of Alternative Treatment Consents
• Reduce risk of deficiency tags and lawsuits resulting from decisions made by or on behalf of resident that exposes resident to harm or causes harm
• New SOM provisions suggest CMS is giving
greater weight to resident choice
• Choice will not always be trumped by safety
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• SOM Guidance under F 155
• Right to Refuse Medical and Surgical
• Treatment Rev. 127, effective 11‐26‐14 pg. 16/731
• When resident (directly or through advance
directive) declines treatment, may not be treated against wishes
• Resident refusal not grounds for discharge; must follow discharge rules
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Refusal of Treatment Orders
• Facility expected to:• Assess decision‐making capacity, involve health care agent or legal rep if capacity found to be lacking
• Determine and document what resident is refusing
• Assess reasons for the refusal
• Advise of consequences of refusal
• Offer pertinent alternative treatments
• Continue to provide all other appropriate services
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Refusal of Treatment Orders
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• Resident/Representative Interviews
• What have staff, practitioner done to inform
resident about medical condition, treatment
options relevant to resident goals, wishes &
prognosis?
• What has facility done to determine resident’s care and treatment choices?
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Investigative Protocol
• Facility Staff Interviews
• How does staff help resident document
treatment choices?
• How are the choices communicated to the inter‐disciplinary team?
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Determining Compliance
• Healthcare Practitioner Interviews
• How does facility seek, identify and document
resident’s wishes re: advance care planning
and life‐sustaining treatment?
• How does facility ensure medical orders and
treatments reflect resident choices and goals?
• How are choices and treatment decisions
communicated to the interdisciplinary team?
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Determining Compliance
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• Record Review
• Is there documentation of rationale for
recommendations and treatment decisions
related to life‐sustaining treatment options?
• Are practitioner orders consistent with the resident’s documented choices and goals?
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Determining Compliance
• Has facility helped resident exercise rights by:• Explaining the risks and benefits of decliningtreatment?• Incorporating resident choices into medicalrecord, orders related to treatment care andservices?• Consistently maintained advance directives andresident goals in same section of the clinical record or other document filing system for all appropriate residents?
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Determining Compliance
• Failure/implement P&P re: right/decline treatment and other related interventions that lead to resident unawareness of the opportunity decline medical treatment = potential for more than minimal harm
• Failure/identify medical orders detailing
resident wishes to forego lab work, IV antibiotics, IV hydration for seventh episode of aspiration pneumonia = actual harm (not IJ)
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Deficiency Category for Surveyors
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• SOM Guidance only addresses refusal of
medical and surgical treatment
• Applicable to right to refuse other care
and services to extent does not expose
others to harm?
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Refusal of Treatment Orders
• Dietary: refusal thickened liquids, pureedfoods, tube feedings, restrictions on sugar, salt,fluids, alcohol• Safety: refusal of therapy for balance/mobility,assistance and assistive devices; refusal tofollow smoking P&P; insistence on shoes withslippery soles, side rails• Other: refusal of ventilator, respiratory therapy,turning and repositioning, medications;insistence on alternative therapies
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Alternative Treatment Consents and Safety Protocol
• Health Status: age, gender, relevant diagnosesand history (including potential complications fromalternate treatment or protocol• Decision Making Capacity: specify status, whomakes decisions and under what authority• Can provide capacity is intermittent orquestionable; decisions made jointly by residentand agent• Ensure lack/capacity charted by physician totrigger surrogate decision maker authority
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Alternative Treatment Consents and Safety Protocol
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• What order/service resident will not follow,efforts to persuade to follow, compromises offered• Whether physician will change order if signs consent• Who has informed physician of resident refusal(ensure have proof physician informed)• What the alternative treatment/protocol will be• Potential benefits and risks of same, medical andother including, improved quality of life secondaryto honoring resident right to….
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Protocol
• Protocol will staff follow for alternativetreatment• Acknowledgement resident/agent informed of:– health status– risks/benefits of alternative treatment or protocol– acceptance of possible consequences• Signature by resident and/or agent, family members with standing to sue and witnesses
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Protocol
• Smoking and burning candles, incense• Against facility rules, repeated insistence to stop Muscular dystrophy, personality and borderline bipolar disorder
• No cognitive impairments• Risks discussed with resident at a care plan meeting• Smoking apron to reduce her risk of burns• Concern about fire endangering thesafety of others
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Example
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• Smoking, burning candles/incense in facility isprivilege, not a right• Health risks of smoking to resident• Risk of fires, burns• Agrees to follow all rules to minimize risks• Acknowledges failure to follow rules and safetyprotocol would reflect unwillingness to allow• Facility to meet her needs and protect others• Will result in loss of privileges; may result indischarge
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Smoking and Fire Protocol
• Make sure the facility’s assessed resident’s decision making capacity and is not simply looking to family members for treatment decisions
• Verify resident’s wishes (whether expressed by the resident or surrogate decision maker)
• Verify whether surrogate decision maker designated, especially if capacity is questionable
• Obtain competency assessment if any questions, ensure it is documented in clinical record
• Verify resident capacity/incapacity is documented in clinical record
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Road ahead
• Do not assume:
• Family member has authority just because she signed resident into facility and is listed as responsible party
• Physician is aware of the extent of the resident
noncompliance; verify and document
• Have a clear summary of the resident’s current mental status, clinical condition, likely effects of the course of action
• Be clear in explaining the risks and benefits (medical and non‐medical) of resident’s course of action
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Road ahead
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• Explore less risky alternatives (pleasure feedings and tube feedings instead of regular diet)
• Verify the physician’s position on resident’s decision, effect of the decision on treatment orders and recommendations
• Verify physician orders consistent with resident choice; if not, document resident choice is AMA, physician informed and declined to change order
• Include staff protocols for alternative treatment: how risk will be reduced, monitoring for complications
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Road ahead
• Do not overcommit staff on protocols, interventions
• Document how/when the Safety Protocol will be reviewed (quarterly and upon change in condition?)
• Have key family members acknowledge consents signed by competent residents
• Have a witness acknowledge consents signed by agents for residents who lack capacity
• Make sure Safety Protocols kept in designated position in the clinical record
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Road ahead
• Make sure facility has procedures re: resident right to decline treatment and interventions
• Make sure there is a documented process for communicating resident choices and treatment decisions to the care team and interdisciplinary team
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Road ahead
