Swigert - HANDOUT Ethics 2 hours - islha.org - HANDOUT Ethics 2 hou… · Discuss ethical principles related to dysphagia, ... working with patients and families? ... SLP ethical

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Nancy B. Swigert, M.A., CCC-SLP, BCS-S

Baptist Health Lexington

Nancy B. Swigert, M.A., CCC-SLP, BCS-S1

Ethics: Managing Dysphagia in Patients in Palliative and Hospice Care

Disclosures


Nancy B. Swigert discloses:Financial: Received an honorarium for this presentation Receives royalties from LinguiSystems(ProEd) for The Source

for DysphagiaNon-Financial: Have presented on this topic before

Objectives


Discuss ethical principles related to dysphagia, palliative care and hospice

Describe principles of comfort measures

Need for palliative care


Strong correlation between aging and chronic illness

Need to provide symptom and disease management for hospitalized patients not facing death within prescribed time Not eligible for hospice services

o Ross, Mathis & Brockopp (2008)

Cost of managing chronic illness


Management of chronic illness that is not life-threatening accounts for approximately 75% of available health care resources in U.S. Institute of Medicine (2001)

Rice & Fineman (2004)

Palliative or Hospice?


Traditionally palliative care and hospice care is provided to individuals diagnosed as terminally ill

More recently, palliative services are available to patients with chronic conditions who do not meet qualifications for hospice

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Needs of patients with chronic conditions


Management of symptoms: Pain Nausea Fatigue

Psychosocial issues

Spiritual issues

The development of CBH* Palliative Care Program (* Now called Baptist Health Lexington)


Goals of the program to develop a system of care that would address: Unique needs of patients with symptomatic illness regardless of

diagnosis or place on the illness trajectory Patients’ needs in context of social system Holistic care including curative measures and management of

symptoms

Design of CBH team (1998)


Worked closely with Hospice

Consult team: Nurse liaison, chaplain, physician, and social worker (salary cost for nurse and physician shared by CBH and

Hospice)

Measuring outcomes: Primary symptoms/days to control


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2001 2002 2003 2004 2005 2006

Pain

Goals of Care

Nausea

Dyspnea

Terminal Symptoms

Measuring outcomes: Staff satisfaction


Staff on this unit are among top 20% of the hospital departments most satisfied with the hospital as a place to work

Annual nurse turnover rate dropped from 53% to 15%

What is the role of rehabilitation in hospice and palliative care?


With disease progression, patients have: high levels of functional loss Dependency for activities of daily living Mobility dysfunction

Cheville (2009)

Santiago-Palma, Payne (2001)

Information from: Rehabilitation of the Hospice and Palliative Care Patient. Javier, N.S.C. & Montagnini, M.L. (2011). Journal of Palliative Medicine Vol. 14; No. 5. 638-648

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Why do hospice & palliative care patients need rehabilitation?


Multiple factors contribute: De-conditioning Fatigue Complications from therapies Under-nutrition Neurologic and musculoskeletal problems Pain Bowel and bladder dysfunction Thrombo-embolic disease Depression Co-existing co-morbidities

Multiple sources

Do hospice & palliative care patients want rehabilitation?


Most hospice patients express desire to remain physically independent during the course of their disease Wallston, Burger, Smith & Baugher 1988 Ebel, Langer (1993) Mayer (1975)

Benefits of palliative rehabilitation


Improved quality of life

Improved mobility

Better control of pain and other symptoms

Improved mood

Gains in motor and cognitive function

Shorter lengths of stay Various sources

Role of physical therapy


Physical modalities for pain control

Provision of adaptive and assistive equipment

Environmental modification

Education on energy conservation

Exercise

Role of Occupational Therapy


ADLs

Work Tasks

Self-esteem

Role-related tasks

Recreation

Use of adaptive equipment

Role of the SLP (Pollens 2004)


Provide consultation to patients, families and the care team re: Communication Cognition Swallowing

Develop strategies in area of communication skills to support the patient’s role in decision making, maintain social closeness and assist patient in achieving fulfillment of end-of-life goals

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Role of the SLP


To assist in optimizing function related to dysphagiasymptoms to improve patient comfort and satisfaction Promote positive feeding interactions with family members

Communicate with the care team related to overall care of the patient

Differences in palliative and hospice


How does the SLP’s approach differ in palliative vs. hospice Use of instrumentals Facilitations vs compensations How conservative we are with recommendations

Let’s look at a case example

Clinical and Instrumental Results


Clinical exam reveals patient coughing on all liquids from cup Does not cough with small amounts liquid from spooon Appears able to handle fork-mashed foods but c/o feels like

food is sticking

VFSS reveals: Aspiration of thin liquids if taken in greater than teaspoon

amounts Takes nectar thick in large sips safely from cup or straw Significant residue in valleculae with all solids due to reduced

tongue base and pharyngeal wall squeeze

Different recommendationsPalliative Hospice


Proceed to instrumental

Based on instrumental, allow thin liquids in small amounts on teaspoon

Use naturally nectar thick liquids during meals

Multiple swallows

Initiate exercises for tongue base/pharyngeal wall

Likely make recommendations based on clinical exam: Soft foods Second dry swallow Thin liquids in small sips

What resources can the SLP use when working with patients and families?


ASHA Code of Ethics

Principles of Biomedical Ethics

Case law

ASHA Code of Ethics


Principle of Ethics I: Individuals shall honor their responsibility to hold paramount the welfare of persons they serve professionally Rule D: Individuals shall fully inform the persons they serve of

the nature and possible effects of services rendered and products dispensed

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ASHA Code of Ethics


Principle of Ethics I Rule F: Individuals shall not guarantee the results of any

treatment or procedure, directly or by implication; however, they may make a reasonable statement of prognosis

Principles of Biomedical Ethics


Autonomy

Non-maleficence

Beneficence

Justice

Autonomy


Respect for Autonomy

Patients have right to make independent choices about their care

Free from controlling influences and have capacity to make independent decisions

If the patient can’t make independent choice, involve “surrogate decision makers”

Non-maleficence


Above all, do no harm

Do not cause harm or impose the risk of harm

Closely tied to the principle of beneficence

Beneficence


Provide positive benefits to patients

Action done for the benefit of others

Implies an obligation to help others

Paternalism sometimes necessary in order to do good

Paternalism is in conflict with autonomy

Justice


Fairness

Equal access to health care

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Patient rights


Right to predetermine medical treatment limits

Right to discontinue or refuse treatment

Right to refuse to follow swallowing safety recommendations

SLP ethical responsibilities


Determination of efficacious treatment approaches Responsibility to educate/explain potential risks and

outcomes Responsibility to accept patient/family decisions Responsibility to advocate for treatment or no treatment Responsibility to continue or discontinue treatment

History of PEG (Wall Street Journal December 8, 2005)


On June 12, 1979, two physicians inserted the first modern feeding-and-hydration tube to save a sick infant Gauderer & Ponsky at University Hospitals of Cleveland

One dubbed it the “percutaneous endoscopic gastrostomy” nozzle

Before this, a gastrostomy tube required major surgery

History of PEG


Ponsky adapted it in the early 1980s for use with adults

Used with stroke patients initially

Use quickly spread to patients with terminal cancer and elderly with dementia

Device generally low cost ($200-$600)

Short recovery time meant patients could be discharged quickly

Increase in PEG use


Embraced by nursing homes b/c it was a quick way to feed patients who couldn’t feed themselves

Is it easier for the physician to order a PEG placed than to have a difficult conversation with the family?

PEGs in nursing homes


In 1999, nearly 34% of patients with severe dementia who were residents of U.S. nursing homes were living with PEG

Mitchell, DL, Tetroe, JM. Survival after percutaneous endoscopic gastrostomy placement. J. Gerontol A Biol Sci Med 2000; S5A:M735-M739

A recent five-state survey found that 11% of persons dying with dementia had a feeding tube Teno, Mitchell, Kuo et al (2011)

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PEGs and economics


Medicare considers PEGs to be skilled nursing Hand feeding is not skilled

Nursing homes get more money for patients with PEG and they also do not have the cost of paying someone to feed CNA making $8/hr can hand-feed perhaps 2 patients in an hour Can hook up 10 feeding tubes in same amount of time

PEGs and economics


Tube-fed residents in nursing homes generate a higher daily reimbursement rate from Medicaid, but require less expensive care Mitchell, Buchanan, Littlehale & Hamel 2003

Are PEGS cost-driven?


Nursing home industry reports that patients with feeding tubes result in increased cost of care

Case law related to nutrition and hydration


Karen Ann Quinlan case –1976

April 15, 1975 –July 11, 1985

A significant outcome of her case was the development of formal ethics committees in hospitals, nursing homes and hospices

Cruzan- case law


Justices determined that the choice of a person in a persistent vegetative state to decline life support is a protected liberty interest under the 14th amendment, and that this right is exercisable by a lawful surrogate

Supreme Court determined that death after surrogate refusal of AHN is neither euthanasia nor assisted suicide, but simply the natural consequence of the exercise of the patient’s right to refuse unwanted treatment

Patient Self Determination Act


Took effect December 1, 1991

Direct result of Cruzan case

Requires all hospitals and nursing homes receiving federal Medicare or Medicaid funding to inform patients of their rights to provide advance directives like living wills, healthcare surrogates, and durable power of attorney.

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Advance directive


Legal, written statement of medical choices or the way the patient wants medical choices to be determined

Written prior to need for such decisions

Goes into effect when patient can no longer decide for him/herself or can no longer tell others of decision

Cannot be required to have advance directive

Living wills may include:


Directions that life-prolonging treatment not be provided, or once started, that such treatment be stopped

Directions that food (nutrition) and water (hydration) not be provided through artificial means like tubes, or once started, that they be stopped

A choice of one or more persons to act as your surrogate and make decisions for you

Healthcare surrogate


Person you appoint in your living will or in another written document to make medical decisions for you if you are not able to speak for yourself

Durable power of attorney


Advance directive that lets you name someone (attorney-in-fact) to make medical decisions for you if you’re unable to speak for yourself

Similar to healthcare surrogate, but may also give attorney-in-fact power to make decisions about personal and financial affairs

Parental rightsEthics in Medicine- University of Washington School of Medicine

Parents have the responsibility and authority to make medical decisions on behalf of their children. This includes the right to refuse or discontinue treatments, even those that may be life-sustaining.

However, parental decision making should be guided by the best interests of the child. Decisions that are clearly not in a child's best interest can and should be challenged.

What is the basis for granting medical decision making authority to parents?

In most cases, a child's parents are the persons who care the most about their child and know the most about him. As a result, parents are expected to make the best medical decisions for their children.

Furthermore, since many medical decisions will also affect the child's family, parents can factor family issues and values into medical decisions about their children.

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When can parental authority to make medical decisions for their children be challenged?

Medical caretakers have an ethical and legal duty to advocate for the best interests of the child when parental decisions are potentially dangerous to the child's health, imprudent, neglectful, or abusive.

When satisfactory resolution cannot be attained through respectful discussion and ethics consultation, seeking a court order for appropriate care might be necessary.

What if parents are unavailable and a child needs medical treatment?

When parents are not available to make decisions about a child's treatment, medical caretakers may provide treatment necessary to prevent harm to the child's health.

Should children be involved in medical decisions even though their parents have final authority to make those decisions?

Children with the developmental ability to understand what is happening to them should be allowed to participate in discussions about their care. As children develop the capacity to make decisions for themselves, they should be given a voice in medical decisions.

Case law: Terry Schiavo


Schiavo case raised the question: should AHN be considered medical therapy that lawful surrogate can refuse based on preferences the patient had expressed orally while competent

Arguments for distinguishing artificial nutrition and hydration from other life-sustaining medical treatments


“Basic sustenance vs. medical procedure” NG tubes “minimally invasive” “Causation - dying of starvation rather than underlying

disease process” “Allowing physicians to withhold or stop AHN is step on

slippery slope to euthanasia for devalued human lives”

Why those arguments don’t work


Artificial nutrition and hydration = medical procedure

Virtually every reported appellate case has rejected these objections

Nutrition and hydration may be forgone according to same standards as any other medical treatment

AMA classifies artificial nutrition and hydration as “life-prolonging medical treatment”

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Medicare and Medicaid requirements


For long-term care facilities - recognize that competent residents have unqualified right to refuse treatment, including artificial nutrition and hydration when state law permits

Cause of death is patient’s inability to eat, brought about by disease or injury, and cannot be characterized as starvation

Artificial nutrition and hydration carries own set of risks, discomforts and drawbacks


Courts view PEG as highly intrusive

NG can contribute to progression of disease

Persistent vegetative state -- continuing artificial nutrition and hydration denies dignity

Dehydration and starvation


“It may not result in more pain than the termination of any other medical treatment” In conscious patients, if adequate analgesic medication is

provided, death should be painless In persistent vegetative state, will certainly be painless

DeGrella Case


Mother of patient in vegetative state as result of severe beating brought suit against guardian, seeking court authorization to order medical personnel to discontinue nutrition and hydration by tube

Supreme Court upheld that mother could order life-sustaining treatments d/c irreversible patient’s prior statement

State statutes and appellate casesSieger, et al 2002


Twenty-seven states (39%) have one or more explicit statutory provisions delineating a separate and more stringent standard for ANH refusal with a higher evidentiary standard Requirement for specific preauthorization Qualifying medical conditions Second medical opinion Judicial review, etc

Professional malpractice “Delivery of patient care that falls below the standard

expected of ordinary reasonable practitioners of the same profession acting under the same or similar circumstances”Scott, 1994, p. 20

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Professional malpractice Now more broadly defined to include: Potential for liability if there is a breach of patient-clinician

contractual promise Liability for defective treatment-related products that cause

harm to the patient Liability for abnormally dangerous treatment activities

Criteria that must be met to be found guilty of malpractice (Ohliger, 1996)

Existence of duty of care Agreement by the clinician to enter a patient/client relationship Not bound to provide care to every patient, but once patient is

accepted, clinician has duty to protect the patient from foreseeable harm

Legal implications Standard of care healthcare providers have duty to exercise “the reasonable

degree of skill, knowledge, and care ordinarily possessed and exercised by members of the same profession under the same or similar circumstances”

May be compared to peers not in the same community

Legal implications Foreseeable harm If reasonable clinician could not have foreseen that harm would

have resulted from actions, no liability for negligence e.g. patient placed on pureed + thick liquids secondary to aspiration; SLP

gives patient glass of water

probably considered below standard of care, and found liable for negligence

Legal implications Causation Clinician’s actions must be the “cause in fact” of the injury have to show that “but for” the health care provider’s actions, the injury

would not have occurred

Proximate cause was there an intervening act not reasonable foreseen *

Legal implications Proximate cause (e.g. Huckabee & Pelletier, 1999)

SLP instructs nursing assistant to supervise patient and NOT give water

Assistant leaves patient unattended and unexpectedly, family member visits and gives water

Would this be considered foreseeable?

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Informed consent to treat Providing patient with sufficient information about proposed

treatment and its reasonable alternatives to allow patient to make a knowing, intelligent, and unequivocal decision regarding whether to accept or reject the proposed treatment (Scott, 1994, p. 219)

Informed consent to treat should include: Description of diagnosis

and evaluation, proposed treatment, presented to patient in terms they can understand

Discussion of “material” risks

Reasonable alternatives

Expected benefits and prognosis

Solicit questions from the patient about proposed treatment plan

Risk of aspiration with tubes


Aspiration pneumonia most common cause of death after PEG placement

Feeding tubes (NG & PEG) actually increase the risk of aspiration pneumonia GERD? Oropharyngeal colonization?

Plonk, 2005

Aspiration and tubes


Non-randomized prospective study Orally fed patients with dysphagia had fewer major aspiration

events than those tube fed

Non-randomized, retrospective observation of SNF residents found no survival advantage with tube feeding Reported in Finucane et al 1999

Burdens and complications of PEG


Pain at site of tube

Diarrhea

Nausea

Hematoma

Fistula

Peritonitis

Abdominal abscess

Loss of dignity Plonk 2005

Poor prognostic factors for PEG placement (Plonk)


Older than 75 years

Male

Diabetes Mellitus

COPD

Advanced cancer

Previous aspiration

NPO x 7 days

UTI

Low BMI

Hospitalized

Bedridden

Pressure sores

Confusion

Cardiac disease

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Number of patients who can’t eat will increase


Council on Bioethics (2005) warned that number of patients with Alzheimer’s, estimated then at 4.5 million, will triple in the next 45 years

How do families make decisions?


Families of individuals with dementia engage in choices about feeding more often than any other treatment, but report quality of decision-making is poor

Givens et al 2009

Decision aids


Provide patients and families with structured information about a clinical choice

Used to enhance clinical decision-making

Present balanced, evidence-based information about risks, benefits, and alternatives to a particular decision Elwyn, O’Connor, Stacey, et al 2006

A Decision Aid for Long-Term Tube Feeding in Cognitively Impaired Older Adults (Mitchell, Tetroe & O’Connor 2001)


Substitute decision-makers for 15 cognitively impaired inpatients being considered for placement of PEG

Questionnaires used to compare the decision-makers’ knowledge, decisional conflict and predisposition regarding feeding tube placement before and after exposure to the decision aid

A Decision Aid for Long-Term Tube Feeding in Cognitively Impaired Older Adults (Mitchell, Tetroe & O’Connor 2001)


Results: Increased their knowledge and decreased their decisional conflict regarding long-term tube feeding after using the decision aid

Impact of the decision aid on predisposition toward the intervention was greatest for those who were unsure of their preferences at baseline

Improving Decision-Making for Feeding Options in Advanced Dementia (Hanson et al 2011)


Randomized, Controlled Trial

24 nursing homes in NC

Residents with advanced dementia and feeding problems and their surrogates

Surrogates received audio or print decision aid on feeding options

Controls received usual care

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Primary outcome was Decisional Conflict Scale measured at three months

Other main outcomes: surrogate knowledge, frequency of communication with providers and feeding treatment use



Surrogates in both groups experienced the same level of decisional conflict at time of study enrollment

After three months, surrogates who received the decision aid had significantly lower scores on each subscale



After review of the decision-aid, intervention surrogates had higher mean knowledge scores than controls and expected fewer benefits from the tube feeding

Over the next 3 months, surrogates in intervention group were more likely than controls to have discussed feeding treatments with MD, APRN,PA



Decisional regret was low and satisfaction high at 3 months for both groups

After 3 months, residents in the intervention group: had greater use of some assisted oral feeding techniques than

those in the control group Were more likely to receive a dysphagia diet Trend towards greater use of specialized assistance for feeding

Mortality similar for both groups



At 3 months, explicit choices for or against tube feeding were rare, so performed chart review at 9 months: 3 controls vs. 1 intervention resident had feeding tube 2 control vs. 4 intervention residents had orders not to tube

feed Weight loss less common at 9 months for intervention group

Decision aid


Making Choices: Long Term Feeding Tube Placement in Elderly Patients Mitchell, Tetroe, O’Connor, Rostom, Villeneuve, Hall (2001;

2008)

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Resources for professionals


Several organizations have developed position statements on ANH American Academy of Hospice and Palliative Medicine

Statement on Artificial Nutrition and Hydration Near the End of Life

American Dietetic Association: Ethical and Legal Issues in Nutrition, Hydration, and Feeding

AMA Statement on End-of-Life Care American Society for Parenteral and Enteral Nutrition

Statement on Ethics of Withholding and/or Withdrawing Nutrition Support Therapy

Have the medical and legal communities reached consensus?


Some religious groups have actively challenged living wills that call for patients to die without having a tube placed Agudath Israel case re: Lee Kahan

February 2005 New York State Supreme Court Judge ordered patient’s daughter to keep her mother alive as long as medically possible Note: living will was incomplete



Some groups treat the PEG as an issue similar to stem-cell research and abortion

Burke Balch, director of National Right to Life Committee’s Robert Powel Center for Medical Ethics: Their interest in end-of-life care is equivalent to its concern

over abortion



Lawmakers in dozens of states have sought changes that would make it harder to remove feeding tubes

Right to Life Committee has won sponsors in more than 10 states for legislation requiring courts to presume a mentally handicapped patient would want to live

Why is oral feeding a challenge in advanced dementia for patients in SNFs?


Lack of attention to individual food preferences, especially related to ethnic choices

Dysphagia is common, and instead of feeding slowly, residents are fed quickly

Dysphagia complicated by poor oral health and ill-fitting dentures Placed on pureed diets

which are unappealing

Inadequate staffing and lack of supervision

Poor oral intake leads to…


Weight loss

Malnourished state

Placement on pureed, unappealing diet

Commercial supplements added

May decrease appetite for regular food

Unable to express food preferences

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Careful Hand Feeding: A Reasonable Alternative to PEG Tube Placement in Individuals with Dementia(DiBartolo, 2006)


What the nurse or family member needs to know in order to safely feed the patient

General strategies for optimizing oral intake in persons with dementiaFrom: Alzheimer’s Association 2004; Amella (2004) Robnson, Spencer and White 2002)


Adapt to the Person’s Food Preferences and Reduce mealtime confusion Regular schedule of mealtimes Preserve rituals (e.g. blessing; who sits where) Memory aids (e.g. clocks, bulletin board) Eyeglasses and hearing aids Calm environment Simplify (e.g. one food item on plate, one utensil) Avoid patterned plates, placemats Solid and contrasting colors Appropriate cueing (e.g. speak slowly, clear directions) Patience! Don’t criticize eating habits or urge to eat faster

General strategies for optimizing oral intake in persons with dementia


Encourage independence Serve finger foods or sandwiches Have snacks available and within reach Use modified utensils (e.g. spoons with large handles) Use cups or mugs with lids to prevent spills, straws that bend,

fill glasses half full Use hand-over-hand technique to initiate self-feeding



Experiment with solutions to decreased appetite Serve preferred foods Foods with strong flavors, temperature differences Plan for several small meals Increase physical activity Consider food supplements (e.g. yogurt, milkshakes, egg nog) Use vitamin supplements only on recommendation of physician



Minimize problems with chewing and swallowing Remind frequently to chew, eat slowly, swallow Position upright Don’t return patient immediately to supine Serve appropriate foods (e.g. bite size, soft foods) Avoid foods that are choking hazards (e.g. nuts, popcorn, raw

vegetables) Moisten foods with gravy, broth if person has trouble chewing



Other tips Check for properly fitting dentures Be sure foods served are not too hot Check for pocketing of food in mouth Place damp washcloth under plate/bowl to keep it from sliding

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Careful hand feeding – other considerations


Small bites

Monitor to be sure patient has swallowed before offering another bite

If person holds food in mouth, offering an empty spoon may cue patient to swallow

Many creative programs used in long term care facilities


Silver spoons

Second seating

Happy hour

Clock reminders

Social meals

Touch, verbal and musical encouragement

Feeding assistants

Advice to families Be encouraging and accepting of the amount of food the

patient feels like eating. Don’t try to bargain to eat just one more bite. The body is saying what the limit is and eating just to please you may cause discomfort and negate any benefits or pleasure received from the small amount of food eaten.

Find out from the patient what sounds good and keep a variety of easy to prepare snacks on hand. (Pudding, Jell-O, etc.)

Advice to families As appetite declines, only small amounts will be tolerated by

the patient. Some patients enjoy the taste of liquid nutritional supplements. Caregivers sometimes feel better when they know the patient is taking in something with nutritional value.

Keep the mouth fresh and clean between meals.

Advice to families Provide an appealing setting for meals, away from the “sick

room” if the patient is able to move. Avoid unpleasant smells in the room.

Make every calorie count. Encourage the patient to have snacks that are high in calories and nutrition (ice cream, puddings, milk shakes, etc.)

Dementia as terminal illness


Information on terminally ill and eating

What can we learn from mentally alert patients who are terminally ill?

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Is PO necessary in terminally ill patients? (McCann et al 1994)


Objective. —To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteralalimentation.

Is PO necessary in terminally ill patients? (McCann et al 1994)


Setting. —Ten-bed comfort care unit in a 471-bed long-term care facility. Participants.—Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit.

Main Outcome Measures. —Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients.

Results McCann et al


Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially.

20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness.

In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips.

Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients.

Conclusions re: terminally ill


Patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation.

Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration.

Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.

Risk of dehydration? (Gillick 2000)


Many elderly have impaired thirst mechanism

In terminal phase of Alzheimer’s disease, dehydration minimizes discomfort

Hydration without nutrition causes discomfort because it prolongs process of dying Increases production of urine and sputum

What is the SLP’s Role?


Roles

Relationships

Documentation

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Relationship with family


Document discussions with the family regarding treatment options and the family’s reaction to those options

Disclose to the family the risks involved in all treatment options, including the family’s desired options



Document the risks and the disclosure, as well as the family’s choice to decline treatment and their reasons for declining or desiring certain treatment.

Document family’s understanding of the risks involved in all these options.



Document instructions given to the family, including specific safety precautions. Instructions should be written and included in the medical record.

Document family’s response to instructions. Did they understand reasoning behind the instructions? Do they need further instruction/training?



Document recommendations and clinical opinions about treatment options, including safety concerns regarding the various treatment choices.

Document physician conferences concerning treatment options, family choices, and pressures. Include physician’s response to family concerns. Is physician leaning toward family’s choices even though these are

inappropriate?

Relationship with physician


Document the presence of conferences with physician

Clearly document the difference of opinion with the physician and the physician’s stated reasons for his or her opinion.

Document the SLP’s safety concerns regarding the physician’s proposed options.

Relationship with physician


Document the SLP’s specific recommendations to the physician and reasons for these recommendations.

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Relationship with 3rd party payer SLP should provide all relevant information to the payer,

whether requested or not

SLP should verify exact basis for the utilization review/denial

SLP should articulate to the payer the risks and dangers of failing to provide the requested treatment

Relationship with 3rd party payer SLP should insist on review of the decision by another SLP

SLP should inform the patient of the SLP’s recommendations, the payer’s response, and the risks of not providing treatment

SLP should request the payer reconsider the denial, and use any available formal appeals process

Relationship with 3rd party payer SLP should submit updated patient information to the payer

SLP should consider expedited court relief

SLP should resolve all doubts in favor of patient safety

SLP should remember the “golden rule”: document, document, document!!

Questions? Discussion?


Myths and realitiesfrom: Kansas City Hospice

Some of these myths and realities may be helpful in educating patients and families

Myth: Artificial feeding prolongs life.

Reality: Patients with advanced disease do not necessarily live longer with artificial feeding and may, in fact, suffer more as a result of the feeding. Artificially feeding the body often brings medical complications. This is more likely to be true if the illness is cancer, chronic lung disease, dementia, kidney failure, chronic heart disease or cirrhosis. Additionally, there is some evidence that cancer grows faster with extra nutrition. This is possibly because, in late-stage disease, the nutrients may “feed the tumor” rather than the body. Artificial feeding is most likely to extend life for patients with neurologic disorders like stroke or coma.

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Myth: If the patient doesn’t eat, he will die of starvation.

Reality: Patients who stop eating because they have end-stage disease die of their illness, not a lack of food. Patients can live for months on a few bites of food and a few sips of fluid a day.

Myth: Without nutrition, the patient will suffer more.

Reality:When the body no longer needs or benefits from the nutrition being offered, there seems to be a mechanism that “turns off ” the appetite and the desire for food. At the same time, the body seems to compensate for the lack of food by producing a chemical that acts as a buffer preventing the hunger healthy people would experience if they stopped eating.

Myth: Dehydration causes suffering

Reality: While dehydration can be a serious condition in a healthy person, we have learned that in the end stages of life the body simply can’t process all those fluids. Research has shown that many patients are actually more comfortable when the body does not have to struggle with fluid overload. If a patient has a dry mouth or feels thirsty, ice chips and drops of water can address those symptoms to keep the patient comfortable. Mouth swabs to help clean and moisten the mouth can be helpful. Putting fluids into an IV will not prevent a dry mouth and may cause fluid overload.

Myth: Artificial feeding is just like eating, but the nutrition is given another way

Reality: Artificial feeding differs from eating and drinking in many ways, and should not be considered natural. When patients have a feeding tube in their stomachs, they lose the pleasure of eating. The pleasure of eating comes from the flavor of the food and from sharing a meal, neither of which occurs with tube feedings. Many patients are distressed by the change in their body image or by having to be hooked up to a machine. In addition, when food and fluids are given through a stomach tube or into an IV, the body cannot regulate the amount of intake relative to the amount it can handle. This can lead to problems with excess fluid in the system. Intravenous feeding requires very close monitoring through blood tests and can lead to bloodstream infections.

Myth: Patients will be stronger if they are fed artificially

Reality: Patients are rarely stronger if they receive artificial feeding or fluids.

Myth: Tube feeding prevents pneumonia in patients who have swallowing problems

Reality: Patients who receive their feeding through a tube into the stomach still are at risk for pneumonia, which occurs in approximately 50 percent of cases. Sometimes the feeding solution travels back up the esophagus and goes into the lungs.

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Myth: Tube feeding prevents bedsores and other problems due to malnutrition

Reality:Tube feeding has not been shown to prevent bedsores, and having a tube may make it harder for the patient to move around, causing more risk of bedsores.

Documents

Swigert - HANDOUT Ethics 2 hours - islha.org - HANDOUT Ethics 2 hou… · Discuss ethical principles related to dysphagia, ... working with patients and families? ... SLP ethical