57 year old Caucasian female, college educated Diagnosed with stage 4 breast cancer with lung mets in 2005

5 Neoadjuvant chemo followed by mastectomy Radiation therapy to chest wall Femara Maintenance Herceptin

New lung mets 3 years later Changed from Femara to Aromasin Comorbidities

COPD Developed diabetes during treatment

Tumor markers increased, new lung mets so started on chemo with Herceptin in 2010

Comes for treatment when she feels like it Poor dentition does not follow through with dental visits Lymphedema does not show for therapy appointments Did not follow through with Diabetes Center referral Does not get prescribed radiologic studies

Developed SVC syndrome repeatedly did not show for port replacement and stenting Smoke 4 packs a day requested Chantix but never got it Does not follow diabetic diet or take meds appropriately blood sugars routinely in 500-600 range Weight gain of 100 lbs. in last 2 years

Drug seeking initially and accused of selling prescription narcotics to minors on the street. Can be belligerent at times. States she has no money gets cab vouchers, Meals on Wheels, charity meds Does have Medicaid

 Should

the health care provider continue to care for this patient who takes no responsibility and is noncompliant or nonadherent to treatment regimens and recommendations?

The patient The patients significant other and family members The health care providers physician, nurse practitioner, clinic nurses, social workers and other departments who provided care Other patients treated by the above health care professionals Charity providers

Determinism
Every event has a cause Behavior caused by decisions Decisions by desires Desires by our character Character by genetics and environment

Beyond our control Patient cant be held responsible

Noncompliant patients are often encumbered by external and internal constraints We can not rule out that determinism is untrue Can not rule out unrecognized constraints Can we be morally certain a patient is responsible?

The nurse, in all professional relationships, practices with compassion and respect for the inherent dignity, worth and uniqueness of every individual, unrestricted by considerations of social or economic status, personal attributes, or the nature of health problems.

1. The patient is responsible (and withhold

treatment) and the patient is responsible 2. The patient is responsible (and withhold treatment) and the patient is not responsible 3. The patient is not responsible (and give treatment) and the patient is responsible 4. The patient is not responsible (and give treatment) and the patient is not responsible

Controlling decision is avoiding the worst outcome Choosing where there is a mismatch

Outcomes (2) and (3)

(2) is worse treatment withheld when it should not have been (3) treatment given when it could have been withheld and no harm is done

 Patients

right to choose compliant or noncompliant behavior Right to refuse treatment Duty to adhere to treatment is a prima facie duty which can be over-ridden by other ethical duties to self or others

Ethical decisions based on the roles and responsibilities of being in a relationship to others Refusal to comply with therapy may reflect value conflict about who establishes therapeutic goals Caring relationship attempt to understand barriers and develop strategies to motivate patient Care would not be withheld

 In

this case, there are no religious barriers to adhering to treatment Cultural barriers - poverty

 Continue

to provide treatment Patients health continues to decline slowly Withhold treatment Patient would die quickly

Continue to provide cancer treatment Continue stop gap measures

Role of the Advanced Practice Nurse

Continue to educate patient about therapy and benefits of adherence Use of contracts

Bargaining for compliance or change to

palliative therapy

Age 57 white female, college educated Dx Stage 4 breast CA w/ lung mets 2005 Neoadjuvant chemo, mastectomy, radiation therapy to chest wall, Femara, maintenance Herceptin Comorbidities

COPD Developed diabetes during treatment

Tumor markers increased, new lung mets

 Skips

CA treatment without notice Refuses needed dental care appts Refuses lymphedema therapy appts Refuses Diabetes Center referral Refuses needed radiologic studies

Refused port replacement and stenting: resulted in SVC syndrome Refuses smoking cessation aids Smokes 4 packs/day: worsens COPD Refuses diabetic diet & proper med use:

Gained 100 lbs. in 2 years Glucose often 500-600

Initially drug seeking & accused diversion to minors Belligerent at times. Requests cab vouchers, Meals on Wheels, charity meds Care of uncooperative patients longstanding in nursing literature (Schwartz, 1958)

 Should

the practice continue to care for this patient whose choices diminish her own health and block others from using resources?

Patient Patients family, inc. significant other Healthcare providers Social service providers Other patients Payers Courts Risk managers

 ANA

Code of Ethics (ANA, 2001) AMA Principles of Medical Ethics (AMA, 2001) Ethics Consensus Statement of Council of Medical Specialty Societies (Charles & Lazarus, 2000)

Historical physician-patient dyad perspective (Paris & Post, 2000; Pellegrino, 1995; Radovsky, 1990) General justice of the system as a whole (Aquinas, 1920) Personalistic communitarianism (Maritain, 1947)

 Res

publica + virtue (Paris & Post, 2000) Cicero + Aristotle Vs. Hobbes social contract (Timmons, 2012) Vs. American enlightened self interest / contractarianism (de Tocqueville, 1994)

Extraordinary or disproportionate means

No reasonable hope of benefit, or Excessive burden (inc. expense) on family or

community

(USCCB, 2001)

Extraordinary means takes seriously the impact on the family commons Res publica is extraordinary means expanded to the whole society (Paris & Post, 2000)

Leap to res publica is leap from care of a particular patient to care of all patients Provides BENIFICENCE Serves JUSTICE Revisit Codes Helps satisfy cries for contributive justice (Morreim, 1995)

Other stakeholders are not intruders, but are moral agents

Essential parts of the whole Each concerned for the well-being of the

whole

Decision-makers:
Those who may receive harm or benefit, and Those who pay

New focus on matching treatment with patients most likely to benefit No longer focus only on pt autonomy No longer the sole responsibility of the provider to the individual

1. Discussion between patient and provider: a. Resources of practice can be more effectively utilized for other pts b. Expect to transfer care to another organization within 60 days c. Give list of other care sources d. Offer to assist with finding optimal new setting 2. During 60 days: 1. Help pt find appropriate care 2. Assess whether pt is newly responsible 3. At 60 days, execute contract to continue ,

otherwise, transfer care via certified letter (Farber et al., 2008).

Pt will adhere closely to prescribed treatment and thus prove appropriate utilization of resources
Retain patient at practice

Pt will continue to refuse treatments, and thus show waste of resources

Transfer patient to new care setting

Former eras:

Historical physician-patient dyad Period of increased focus on pt. autonomy

New res publica: Match treatment with patients most likely to benefit, therefore: Should not continue to provide care to this patient who is less likely to benefit than other patients who could receive care at the practice.

American Medical Association (AMA). (2001). Principles of Medical Ethics. Retrieved from http://www.ama-assn.org/ama/pub/physicianresources/medical-ethics/code-medical-ethics/principles-medicalethics.page? American Nurses Association (ANA). (2001). Code of Ethics for Nurses with Interpretive Statements. Washington, DC: ANA. Aquinas, Thomas. (trans. 1920). II-II. Q.58, art. 6. Summa Theologica of St. Thomas Aquinas (2nd rev. ed.). Fathers of the English Dominican Province. Retrieved from http://www.newadvent.org/summa/3058.htm#article6Billica, K. (1989). A discussion of ethical issues. Focus on Critical Care, 16 (2), 123125.Browne, A., Dickson, B., & Van Der Wal, R. (2003). The ethical management of the noncompliant patient. Cambridge Quarterly of Healthcare Ethics, 12, 288-299. Charles, S. C. & Lazarus, J. A. (2000). Reframing the professional ethic - The Council of Medical Specialty Societies consensus statement on the ethic of medicine. Western Journal of Medicine, 173, 198201. de Tocqueville, A. (1994). Democracy in America. New York, NY: Random House.Edwards, S.S. (1999). The noncompliant transplant patient: a persistent ethical dilemma. Journal of Transplant Coordination, 9(4), 202208.Erlen, J.A. (1997). Ethical questions inherent in compliance. Orthopaedic Nursing, 16(2), 77-80.

Edwards, S.S. (1999). The noncompliant transplant patient: a persistent ethical dilemma. Journal of Transplant Coordination, 9(4), 202-208.Erlen, J.A. (1997). Ethical questions inherent in compliance. Orthopaedic Nursing, 16(2), 77-80. Farber, N. J., Jordan, M. E., Silverstein, J., Collier, V. U., Weiner, J., & Boyer, E. (2008). Primary care physicians decisions about discharging patients from their practices. JGIM: Journal Of General Internal Medicine, 23(3), 283287. doi:10.1007/s11606-007-0495-7 James, M.A. (2001). The physicians role in the distribution of limited resources. Topics in Spinal Cord Injury Rehabilitation, 6(4), 83-87. Maritain, J. (1947). The person and society. In The Person and the Common Good. Retrieved from http://maritain.nd.edu/jmc/etext/cg.htm Morreim, E. (1995). Moral justice and legal justice in managed care: The ascent of contributive justice. Journal of Law, Medicine & Ethics, 23(3), 247. Moseley, K.L. & Truesdell, S. (1997). A noncompliant patient? The journal of clinical ethics, 8 (2), 176-177.

Muskin, P.R. (1997). Care, support, and concern for noncompliant patients. The journal of clinical ethics, 8(2), 178-179. Paris, J. J., & Post, S. G. (2000). Managed care, cost control, and the common good. Cambridge Quarterly of Healthcare Ethics, 9 (2), 182-188 Pellegrino, E. D. (1995). Nonabandonment: An old obligation revisited. Annals of Internal Medicine, 122(5), 377-378. Phillips, S. (2006). Ethical decision-making when caring for the noncompliant patient. Journal of Infusion Nursing, 29(5), 266-271. Resnick, D.B. (2005). The patients duty to adhere to prescribed treatment: an ethical analysis. Journal of Medicine and Philosophy, 30, 167-188. doi:10.1080/0360531059026849 Schwartz, D. (1958). Uncooperative patients. The American Journal of Nursing, 58(1), 75-77. Stokes, Dixon-Woods & McKinley (2004). Ending the doctor-patient relationship in general practice - a proposed model. Family Practice, 21(5), 507-514. doi: 10.1093/fampra/cmh506 Timmons, M. (2012). Conduct and Character, (6th ed). Boston, MA: Wadsworth.United States Conference of Catholic Bishops (USCCB). (2009). Ethical and Religious Directives for Catholic Health Care Services (5th ed.). Retrieved from http://usccb.org/