End of life decision making and Ethical implications



End of life decision making and Ethical implications

Submitted in Partial Fulfillment of the Requirements

for the Degree of Doctor of Nursing Practice

in the Graduate School of the

Texas Woman's University

by

Susan Alex

Dated : 10-28-13

Introduction

Summary of the Case Study

Ms. J B is an 81 years old African America female who presented to St Paul ER with altered mental status. The patient was noted to have low blood glucose in the field and given D 10 by the EMS. Upon arrival she was noted to have elevated lactate and creatinine. Her cardiac enzymes were also elevated. She was then found to be bacteremic and have aortic valve vegetation. She was diagnosed with viridians streptococci endocarditis and placed on IV antibiotics. There was also a concern for pneumonia and the patient was found to have bilateral pleural effusions. Neurology, nephrology, cardiology, cardiothoracic surgery and pulmonary consult were place. Neurology found that she had a large right MCA territory infarct. Cardiothoracic surgery felt that patient needed a valve replacement once she recovered from her stroke. She underwent a decompressive right hemicraniectomy due to her cerebral edema and she progressively declined after the procedure. She is also on ventilator support. Upon review of her records, we found that patient was a drug abuser.

As her primary attending medical team, we neurology, decided to have a family meeting to make a decision about further treatment. There was no family member around. We tried to contact them several times. Finally we got in touch with her Pastor who gave us the patient’s sister’s number. According to the sister, she has a daughter and is also a drug user and the patient was living recently with her. We tried to contact the daughter several times. There was no response. So we called her sister and asked if she could be her surrogate. Sister agreed to be her surrogate. We explained the prognosis and provided her with options to continue care with trach, PEG placement etc or comfort care. She wanted to choose comfort care. According to the patient’s sister, Ms. BJ won’t like to live a life like this. But her daughter, who has closer ties of kinship, also known to be a drug user, was not available to make a decision. Unfortunately, we tried to contact her many times but never got in touch with her. Finally, we decided to make a decision with her sister in the setting that no other family member is available to make a decision .

General Ethical Dilemma

Should we continue with comfort care measures as decided by one of her daughters? Can we make a decision knowing, without informing the other daughter?

The ethical dilemma in this case is decision making as the patient is not competent enough to make a decision. In a situation where an individual is incompetent, and unable to make an informed decision about health care, decision making may often be guided by the substituted judgment principle as a means of prompting the underlying values of self-determination and well being (Bailey, 2002). The ability to be self-determining is assumed to be very important to most individuals, and hence the substituted judgment principle is frequently relied upon in clinical practice when decisions must be made on behalf of an incompetent patient.

Stakeholders in the Issue

The primary stake holder in this case is the daughter who we cannot get in touch. Can we make a decision without her? Several questions must be addressed before making a decision in this case.

Who is making the decision – the person living the life or an observer? What quality of life would the patient experience by continuation or termination of treatment? What types of clinical decisions are justified by reference to quality-of-life judgments?

Ethics Section

Clarification and Expansion of Ethical Dilemma

A substituted judgment is defined as a judgment where an ‘appropriate surrogate should attempt to determine what the patient would have wanted in this present circumstances, or in other words, what treatment the patient would have decided upon if he or she were competent and able to choose(Bailey, 2002). In keeping with the fundamental premise of the substituted judgment principle, family members are commonly considered to be best placed to make proxy decisions on behalf of a patient because they are potentially able to predict accurately the person’s preferences for treatment , upholding his or her self-determination (Hardwig, 1993). ‘Family’ is defined as those persons who are emotionally intimate or familiar with the patient. This could include blood or marriage relations as well as intimate friends and partners (Hardwig, 1993).

The second point to be clarified is ‘Quality of life’. Quality of life refers to that degree of satisfaction that people experience and value about their lives as a whole, and in its particular aspects, such as physical health (Jonsen, Siegler, & Winslade, 2010, p. 109). A fundamental goal of medical is the improvement of quality of life for those who need and seek care (Jonsen et al., 2010). The activities by the physician examination, evaluation, diagnosis, treatment, curing, comforting and educating aim at improvement of the quality of the patient’s life (Jonsen et al., 2010). The evaluation of quality of life is always relevant to providing appropriate medical care (Jonsen et al., 2010). Patients and their physician must determine what quality of life is desirable and attainable and how it is to be achieved, and what risks and advantages are associated with the desired quality (Jonsen et al., 2010).

Arguments for and against action according to major ethical theoretical perspectives

There are three main areas of concern with substituted judgment principle. First are the implications arising from the fact that the substituted judgment principle is unable to preserve the self-determination of an incompetent patient to the same extent as would be the case were the person competent. For example, there may be difficulties with determining the patient’s preferences in specific circumstances, particularly those that were unanticipated by the person prior to becoming incompetent. Secondly, the substituted judgment principle has been utilized in circumstances when it was to appropriate to do so, for example, when a patient was never competent. Thirdly, there are problems associated with deciding who ought to be appointed as a proxy decision maker, especially when the patient is incapable of making this choice.

Proxy decision making is the act of deciding what healthcare actions are permissible for someone who temporarily or permanently has lost decision-making capacity, never had decision-making capacity, or is not yet considered to have sufficient maturity to make healthcare decisions (Grace, 2009, p. 93). There are three types of surrogate decision making: 1) Autonomy based – person’s previously expressed wishes. E.g., written living will, advance directives, Substituted judgment – Durable power of attorney for health care, informal – family member, friend, and significant other. 2) Best interests- surrogate determines the “highest net benefit among available options” (Beauchamp & Childress, 2001, p. 192), 3) Reasonable person- A standard used when neither A nor B is applicable (Grace, 2009).

Other ways of reasoning through the case

The four basic ethical principles to be considered regarding withdrawal of treatment are autonomy, nonmaleficence, beneficence, and fidelity. The principle of autonomy is fundamental when discussing issues regarding patient decision making (Robinson, 2003). To respect the autonomy of others means to respect their freedom of choice and allow them to make their own decisions. This is also known as self determination (Robinson, 2003). In this case, it’s difficult to determine if the patient’s autonomy is respected as she is not competent enough now and she doesn’t have a written proxy. But we can argue that according to her daughter’s statement that her mother wouldn’t like to live a life like this.

The second principle is non malfeasance. Nonmaleficence, according to Beauchamp and Childress, “asserts an obligation not to inflict harm intentionally” and includes “the prevention of harm and the removal of harmful conditions”. The controversy that exists regarding the principle of nonmaleficence is: what is harm? Some feel that removing a patient from a ventilator and allowing him or her to die would constitute intentional infliction of harm (Robinson, 2003). Others argue that keeping a patient on a ventilator against his or her won will, thus prolonging death, is the intentional inflict of harm (Robinson, 2003). In this case, we based our decision according to her daughter’s statement and considering her quality of life.

The third principle is beneficence. Beneficence requires the provision of benefits. We can provide benefit by offering treatment or by removing harmful treatment (Robinson, 2003). We believed that we are providing benefit by giving her comfort measures. Ms. BJ is on ventilator support and is on sedation with propafol.

The concept of fidelity can be defined as an “obligation to live up to the patient’s reasonable expectations and trust”. In Ms. BJ’s case it was difficult to determine as she was not in a stage to make decision even upon initial presentation to the hospital.

Legal issues

Decisions are most difficult when patients with impaired decision-making capacity have no advance directives and no family members (Lo, 2009). In some cases a friend might be an appropriate surrogate. If no one is available as surrogate, then physicians do not need to administer burdensome interventions that offer little prospect of benefit just because there is no surrogate to decline them on behalf of the patient (Lo, 2009). In Ms. BJ’s case we were able to get in touch with her sister and she agreed to be her surrogate in the setting that her daughter was not available.

Most states have laws that specify which relatives have priority to act as surrogates for incapacitated patients who have not provided advance directives (Lo, 2009). Generally, the patient’s spouse takes priority over adult children, followed by parents and more distant relatives. Such laws might lead to ethically troubling results (Lo, 2009). For example, in this case, making a decision without her daughter over her sister, who at least is involved in the patient’s care at this time?

In some cases the patient indicates the selection of a surrogate informally but does not complete a legal document appointing the person. If the surrogate and close relatives disagree over plans for care, the physician might then face a conflict between what is ethically appropriated and what is legally protected (Lo, 2009). Ethically speaking, the person whom the patient wanted to serve as surrogate should have priority (Lo, 2009). Legally, this person might have no standing to make decisions. The physician should try to persuade the family to respect the patient’s choice of proxy (Lo, 2009).

Personal Decision

I support the decision of comfort care measures for Ms. BJ in the setting of considering her prognosis and quality of life. At this point, patient is on ventilator support and is under sedation. Patient cannot tolerate any food as she has ischemic colon secondary to her medical condition. Patient also won’t be able to undergo any procedure. So we also consulted ethics in her case as her daughter was not available to make a decision. We consulted palliative care for her.

Palliative care medicine is defined as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment, and treatment of pain and other problems, physical, psychosocial, and spiritual.” (World Health Organization).

Summary

Ms. BJ was terminally ill and was incompetent to make a decision about her life. Her daughter was not available to make a decision for her. So we contacted her sister and she agreed to be a surrogate for her. We also consulted ethics committee in her and utilized the substituted judgment principle. Substituted judgment principle protects the self determination of an incompetent individual in the health care setting by allowing a proxy decision maker to express the patient’s preferences as he or she would have done had he or she been able. After discussion and based on her sister’s statement that Ms. BJ would not like to live a life like this, we decided to go with comfort care measures and consulted palliative care.

References

Bailey, S. (2002). Decision making in health care : limitations of the substituted judgement principle. Nursing Ethics, 9, 483-493. doi: 10.1191/0969733002ne538o a

Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics (5th ed.). New York: Oxford University Press.

Grace, P. J. (2009). Nursing Ethics and Professional responsibility in Advanced Practice. Sudbury, MA: Jones and Barlett Publishers.

Hardwig, J. (1993). The problem of proxies with interests of their own: toward a better theory of proxy decisions. Journal of Clinical Ethics, 4, 20-27.

Jonsen, A. R., Siegler, M., & Winslade, W. J. (2010). Clinical Ethics: A Practical approach to ethical decisions in clinical medicine (7 ed.). United States of America: The McGraw-Hill Companies .

Lo, B. (2009). Resolving Ethical Dilemmas (4th ed.). Baltimore, MD: Lippincot Williams & Wilkins.

Robinson, R. (2003). Ethical Analysis. Dimensions of Critical Care Nursing, 22, 71-75.

Appendix A

Case Consultation - Work Sheet A

Case Consultation

Work sheet A

Step 1: Personal Responses

I believe that every person has the right to make a decision about their life. When it comes to the stage that you are not competent enough to make a decision and in the setting of no prior decision, available family members should make a decision. I always support comfort care measures when proceeding with medical treatment is of no benefit to the patient.

Step 2: Facts of the Case

1. Ms. BJ is terminally ill

2. She has no prior proxy.

3. Next of kin is not available to make a decision for her

4. Her sister agreed to be the surrogate decision maker.

Step 3 a: Clinical/ Psychosocial Issues Influencing Decision

1. Would patient benefit from continuing medical care?

2. What are the prospects, with or without treatment, for a return to normal life, and what physical, mental and social deficits might the patient experience even if treatment succeeds?

3. Can the Surrogate decision making cause legal issues in the setting that her next of kin is not available at the time of decision making?

Step 3 b: Initial Plan

1. Consider sister as the surrogate decision maker as daughter is not available

2. Consult Ethical committee in decision making as daughter is not available.

Step 4: Policies & Ethical Code Directive

According to hospital policies and procedures.

Step 5: Ethical Principles Analysis

1. Autonomy

2. Beneficence

3. Nonmaleficence

4. Fidelity

Possible legal issues

1. Next of kin daughter might come and question surrogate decision maker.

Case Consultation

Worksheet B

Plan & Implementation Strategy

1. Consult Palliative Care

2. Maximize pain relief

3. Consult Chaplain for family support.

Advances Clincial/Psychosocial Interests

The goal is to make Ms. MJ as comfortable as possible. Palliative care is giving comfort care measures. We also consulted chaplain services to help the family to deal with these difficult situations.

Minimizes harm and maximizes other ethical principles to the extent possible for the client and relevant others:

Palliative care is actively involved in the care of Ms. BJ.

Allows you to operate within the law:

There is no concern at this time. Comfort care is the best option for Ms. BJ as her quality of life is severely compromised. Her sister who is the only family member available at this time understood the situation and she agreed to continue with comfort care.

Case Study

History and Physical

Department of Neurology and Neurotherapeutics, Cerebrovascular Section.

UT Southwestern Medical Center, Zale Lipshey Hospital.

Attending Physician: Tiesong Shang, MD

Name : BJ

DOB : 03/15/1932

DOA : 10/15/2013

CC: Ischemic stroke and intra cerebral hemorrhage

HPI: Ms. BJ is an 81 years old African American Female who presented to the ER with altered mental status. The patient was noted to have a low blood glucose in the field and was given D 10 by the EMS. She was noted to have an elevated lactate and creatinine. Her cardiac enzymes were elevated. She was then found to be bacteremic and have an aortic valve vegetation. She was diagnosed with viridians streptococci endocarditis and placed on IV antibiotics. ( vancomycin and ceftriaxone). There was also concern for a pneumonia and patient was found to have bilateral pleural effusions. Nephrology, Cardiology, Cardiothoracic surgery, and Pulmonary consults were placed.

PMH: HTN, HLD, DM II, Osteoporosis and anemia.

PSH: Hysterectomy and C Section

Social Hx:

- Tobacco- smokes 1 pack/day x 50 years

- Alcohol – Occasionally

- Illicit Drugs- Hx IV drug use.

FMH : Unable to obtain.

Medications

-Keppra 750 mg IV BID

- Ceftriaxone 1 gm IV daily

- Furosemide 20 mg IV BID

- Metoprolol 50 mg IV BID

Allergies : NKDA

Physical Exam:

Subjective:

CC: Unconscious

Overnight events: Seizures

ROS : Unable to obtain as patient is intubated.

OBJECTIVE

BP 147/56/ Pulse 115/ Temp 36.4 degree C/ Resp 22/Wt 128 lb 15.5 oz/SpO2 94%

Intake/Output Summary ( Last 24 hours ) at 10/15/13 0726

Last data filed at 10/15/13 0600

| |Gross per 24 hour |

|Intake |3149.1 ml |

|Output |1715 ml |

|Net |1434.1 ml |

Wt Readings from Last 3 Encounters:

10/15/13 129 lb 6.6 oz (58.7 kg)

10/15/13 129 lb 6.6 oz (58.7 kg)

CBC:

Lab results

Component Value Date

WBC 10.7 10/15/2013

RBC 2.43 10/15/2013

HGB 9.1 10/15/2013

HCT 22.4 10/15/2013

MCV 92.2 10/15/2013

MCH 29.6 10/15/2013

MCHC 32.2 10/15/2013

RDW 18.1 10/15/2013

PLT 118 10/15/2013

MPV 8.9 10/15/2013

CMP

Lab Results:

Component Value Date

GLU 161 10/15/2013

NA 163 10/15/2013

K 3.0 10/15/2013

CL 123 10/15/2013

CO2 20 10/15/2013

ANIONGAP 16 10/15/2013

BUN 31 10/15/2013

CREAT 1.51 10/15/2013

CA 8.0 10/15/2013

ALB 3.8 10/15/2013

ALP 178 10/15/2013

TBIL 0.7 10/15/2013

MG 2.5 10/15/2013

PHOS 3.8 10/15/2013

AST 68 10/15/2013

ALT 11 10/15/2013

Current Facility – Administered Medications

Medication Status

- Sodium chloride 0.9 % infusion Active

- Norepinephrine (Levophed) 8,000 mcg in dextrose 5 % (D5W) 250 ml Active

- Midazolam injection dose : 2 mg Active

- Albuterol nebulizer solution dose: 2.5 mg Active

- Sodium chloride 0.9% sterile package syringe dose Active

- Hydralazine injection dose 10mg Active

- Labetalol injection dose: 10 mg Active

- Esomeprazole injection dose 40 mg Active

- Famotidine 20 mg IV Active

- Docusate sodium oral solution 100mg Active

- Ceftriaxone 2 gm in sodium chloride 50 ml IVPB Active

- Glucagon injection dose 1 mg Active

- Magnesium sulfate in NS IVPB dose 2gm Active

- Odansetron injection dose: 4 mg Active

- Bisacodyl suppository dose: 10 mg Active

- Fentanyl injection dose: 50 mcg Active

- Levetiracetam 1000 mg in NS 0.9% 100 ml IVPB Active

Significant study result in past 24 hours

CT

IMPRESSION: 1. Continued evolution of the large right MCA territory infarct, status post decompressive right hemicraniectomy. Previously documented areas of subtle hyperdensity within the infarct are again noted and stable. No frank hematoma. Other punctate areas of hemorrhage in the left thalamus and right cerebellar hemisphere are stable as well. 2. Stable mild prominence of the temporal horn of the left lateral ventricle. Extensive sulcal and cisternal effacement are stable with stable midline shift and stable right uncal herniation.

EEG

Note that this EEG was limited by artifacts, but it is consistent with left hemispheric dysfunction in the setting of moderate, non specific diffuse cerebral dysfunction. The periodic pattern seen over left hemisphere is non specific, but can be associated with acute /subacute cerebral injury, and is suggestive of a potential irritative focus that could give rise to seizures. However, no electrographic seizures were seen during this recording. If the clinical suspicion of seizures is high, prolonged video-EEG monitoring should be considered.

Physical exam

General: WD, cachetic appearing, intubated

Cardiac: RRR

Chest: Breath sounds present bilaterally

Focused Neuro Exam:

Mental status: Comatose, intubated, off sedation, does not respond to commands.

Cranial nerves: Limited due to mental status, Down ward gaze palsy, occulocephalic reflex intact. Pupils 2 mm sluggishly reactive. Late cough + to stimulation.

Motor/Sensory:

LUE : Paresis, Decerebrate posturing LUE, Bends RUE. Triple flexion reflex bilaterally to LE to noxius stimuli.

Reflex : Hyper reflexic through out.

Gait: Bed confined.

Assessment/Plan.

Ms. BJ is an 81 years old African American female admitted with large right MCA infarct in the setting of infective endocarditis, IV drug abuse, HTN, DM, HLD, Aortic regurgitation, Acute renal failure . S/P decompressive craniectomy. Ms. BJ is on ventilator support now. Prognosis is very poor.

- Stroke

- Neuro checks Q1H

- Tele monitoring

- Hold tube feeding. NPO in the setting of ischemic bowel.

- Continue current treatment regimen.

- Discuss with family about palliative care options.

Stroke team is actively involved in the care of this patient. Will continue to follow.

Susan Alex ANP- BC.

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