chris jones, md fvamc 6/5/2015 whatever you do, don’t tell my family: clinical ethics at the...

Chris Jones, MD

FVAMC

6/5/2015

Whatever You Do, Don’t Tell My Family: Clinical Ethics at the Bedside

All Rights Reserved, Duke Medicine 2007

Disclosures

I do not have any relevant disclosures for this presentation.


Case

Chief Complaint: weakness/diarrhea

35yo female admitted to DUMC in April, 2012 with recent fungal eye and bacterial dental infection. After oral surgery, she was placed on Augmentin. She completed that 3 weeks ago then developed diarrhea (watery brown 3-4/day – no blood) a week before presenting. Poor oral intake; eating skittles, gatorade, and jello.


Case (cont’d)

She became unable to walk and developed abdominal pain. She also developed a new headache (worse with bright lights) and flat ulcers on her labia.

In the ED, her BP was 70/50 and she got 6L fluid. Lactate was 14 (12 after 6L fluid). WBC 12. Cr 2.4 (baseline 1.0). AST/ALT 1100/300. INR 5. Abdomen distended with large liver palpable.


Past Medical History• Recurrent Thrush• Maxillary abscess s/p oral surgery drainage• R eye fungal infection• Headaches after scooter accident

Social/Family History• Parents worked for the UN. African by decent. Lived in

US since 2007. Very private person. Lives with a housemate. Med tech at Assisted Living. Dad died of DM2. Mom lives in South Africa. Never married and no children. Christian faith.


The Wrinkle

Patient was found to be HIV positive during the hospital stay for dental abscess. The results came back after the patient was discharged.

The hospitalist who cared for her spoke by phone and documented: “I then said that I had some lab test results to share with her and she abruptly stated that she was getting ready to go to work and that she couldn't talk any longer. She stated she would call me back tomorrow to discuss further.”


Telephon-ist

The hospitalist documented a dozen more calls, a full voicemail, a certified letter (“Please call me to discuss lab results”), a phone call to her NOK asking for a call back, a walk to the dental clinic to meet the pt at a scheduled appointment (pt cancelled), and discussion with Health Department.

Pt finally answered the phone. “I told her I needed to discuss test results with her, at which time she said she needed to go and hung up the phone.”


Some HIV Background Information

• 1.1 million Americans are infected with HIV

• 50,000 new infections annually

• As of Dec 31, 2013, over 26,000 HIV+ Veterans cared for by VA

• Undiagnosed HIV in VHA: 0.1-2.8%

http://www.va.gov/vhapublications/ViewPublication.asp?pub_ID=3104


VHA HIV Policy

It is VHA policy that HIV testing be a part of routine medical care; that providers routinely offer HIV testing to all Veterans and provide the test to those who give oral informed consent; and that those Veterans who test positive for HIV infection are referred fpr start-of-the-art HIV treatment, prevention of complications, and care of related conditions, including mental health needs, as soon as possible after diagnosis.

VHA Directive 1113


Question

• What legal issues should we know surrounding HIV testing and diagnosis?


Testing for HIV in VHA Facilities

• VHA Directive 1113 – May 5, 2015

• Lots to do for administrators to become compliant

• HIV testing be part of routine medical care, at least once for adults over age 18 and annually for HIV negative adults with ongoing risk factors


Health Care Providers should:

• Offer HIV testing to those without a documented test at first reasonable opportunity

• Document voluntary oral consent in the EMR• Refer HIV+ patients for ongoing HIV-related care• Inform HIV+ patients of the following routes of

transmission:– Parenteral– Sexual– Perinatal

• Strongly encourage patients to notify their sexual and needle-sharing partners about their status


North Carolina Specific Laws


10A NCAC 41A .0202 CONTROL MEASURES – HIV

The following are the control measures for the Acquired Immune Deficiency Syndrome (AIDS) and Human Immunodeficiency Virus (HIV) infection:

(1) Infected persons shall: (a) refrain from sexual intercourse unless condoms are used; exercise

caution when using condoms due to possible condom failure; (b) not share needles or syringes, or any other drug-related equipment, paraphernalia, or works that may be contaminated with blood through

previous use; (c) not donate or sell blood, plasma, platelets, other blood products, semen, ova, tissues, organs, or breast milk; (d) have a skin test for tuberculosis; (e) notify future sexual intercourse partners of the infection; (f) if the time of initial infection is known, notify persons who have been sexual intercourse and needle partners since the date of infection; (g) if the date of initial infection is unknown, notify persons who have been sexual intercourse and needle partners for the previous year.


Consequences

• Misdemeanor with up to 2 years in jail (NCGS § 130A-26)

• If intentional infection can be proven:– Battery– Assault– Civil damages– No NC felony law for murder or manslaughter


Back to the Case

• The patient was admitted to MICU. She was found to have pseudomonas bacteremia, MAC bacteremia, 127,000 copies/mL HIV viral load, and a CD4 count of <1.

• Team unable to do LP due to coagulopathy from DIC.

• Consults in first 48h included ID, hepatology, transplant surgery, derm, optho.

• Multiple notes comment that pt unwilling to face diagnosis of HIV.


Case (cont’d)

• By HD#2, notes indicate: “patient is very distraught about her overall picture and wanted to delay the conversation of her (HIV) diagnosis for the morn.” Also: “Family does not know, do not tell them”.

• By HD#3, pt intubated. Prior to controlled intubation for hypotension/worsening acidosis, she asked that her family not be told of her HIV diagnosis.


• Patient continued to decline and notes included “prognosis grim”, “withdrawal of care would be very reasonable”, “unfortunately our team will not be able to assist you during this episode”.


• Daily note progression re: HIV status: – Family does not know, do not tell them– Family does not know, do not tell them– Family does not know, do not tell them as per

patient’s request– Family does not know, do not tell them HIV

STATUS as per patient’s request


Family meetings with ICU team

• Brother/sister made patient “no CPR” prior to Mom’s arrival stateside.

• “Mom arrived from South Africa had family meeting, awaiting 72h period off sedation to assess for neurologic function… were held 4/19 in am”


NC Surrogacy Law VA Surrogacy Hierarchy

• Guardian ad litem• Health Care Power of Attorney• Attorney-in-fact with powers for

Health Care

------------------------• Spouse• Majority of reasonably available

parents and children at least age 18• Majority of reasonably available

siblings at least age 18• An individual who has an established

relationship with the patient, who is acting in good faith on behalf of the patient, and who can reliably convey the patient's wishes.

• The patient’s attending physician

NC § 90-322. Procedures for natural death in the absence of a declaration

• Health Care Agent• Legal guardian or special guardian

------------------------• Spouse• Child age 18 or older• Parent• Sibling age 18 or older• Grandparent• Grandchild age 18 or older• Close friend age 18 or older

VHA Handbook 1004.01


Disagreements on Same Level

Attempt consensus

If consensus cannot be reached, the practitioner must choose the surrogate who is best able to represent the patient’s values, wishes, and interests pertaining to the health care decision and document the reasons for choosing that individual. In cases where the choice is unclear, controversial, or if a potential surrogate contests the practitioner’s choice of surrogate, the practitioner must consult with the local Integrated Ethics program officer or Regional Counsel.

http://www1.va.gov/vhapublications/viewpublication.asp?pub_ID=2055


68 hours later

• Patient developed myoclonus vs seizures. Neurology consulted. Found to have status epilepticus.

• Family distressed by uncontrolled seizures (despite diligent work by MICU staff and neurology consult team).


Palliative Care Consult

• Ms. J is a 35yoF of African decent who was recently diagnosed with AIDS with CD4 count of 1. She was resistant to HAART therapy and was very clear that nobody in her family should know that she has HIV/AIDS. She was admitted to the MICU recently and has developed respiratory, CV, renal, and liver failure. She has begun having intractable seizures. Her mother is acting as her surrogate decision-maker and, per pt's wishes, does not know pt has AIDS. I was consulted to help with a family meeting regarding goals of care.


Clinical Ethics

The philosophical study of the potentially annoying


Phone a friend…

What are the major ethical issues in this case?


Central Ethical Issues

• Should we disclose the HIV status?

• Autonomy (patient’s or Mom’s)?

• Who decides?


Decision With Ethics Input

• In favor of disclosure ONLY if “materially relevant” to HCPOA’s (mother) decision-making


Family Meeting

• Told mother her daughter was beginning to die and that it was irreversible.

• Offered to focus on comfort and quality of life moving forward.

• Entire family agreed with that path.• No disclosure made.


IDT Next Day

• I patted myself on the back, happy with the family meeting’s outcome.

• Very sharp chaplain asked, “What will be on the death certificate? Won’t the family get a copy to close her estate and see ‘AIDS’ without anyone there to support them?”


Back to the Drawing Board

• Ethics: “Least worst option” is to disclose and support the family

• MICU team agreed with disclosure to allow support

• Family unavailable that day for meeting. Disclose next day.


7:05 AM

• Patient died peacefully with family at bedside. Family leaves shortly thereafter.

• Palliative Med is not here at 7:05 AM.


That Morning

• Arrive at work• Nurse Manager’s morning…• Arrange meeting with family• Return early and unannounced to Decedent Care


Federal Confidentiality Rules

Confidential – under normal circumstances, only healthcare professionals caring for the patient have access to information in the medical file

HIV/AIDS, substance abuse, and sickle cell anemia are SPECIAL CLASSES and must have SPECIFIC written consent to disclose (VA Form 10-5345).

http://www.hiv.va.gov/provider/policy/confidentiality.asp


Disclosure Without Consent (VHA)

• To meet a medical emergency

• Research, management audits, program evaluation

• Written request from Public health agency

• Court Order

• To the appropriate component of the Armed Forces

providing health care to the veteran

38 U.S.C. Section 7332 http://www.hiv.va.gov/provider/policy/confidentiality.asp


HIV Disclosure Without Consent to Spouse or Sexual Partner (VHA)

• Physician or counselor has made a reasonable effort to counsel and encourage the patient to voluntarily provide this information to spouse or sexual partner (S/SP)

• Physician or counselor reasonably believes the patient will not provide the information to the S/SP

• Disclosure is necessary to protect the health of the SSP

http://www.hiv.va.gov/provider/policy/confidentiality.asp38 U.S.C. Section 7332 http://www.hiv.va.gov/provider/policy/confidentiality.asp


Final Family Meeting

• Mother (as NOK) signs a paper release to allow us to release patient’s H&P to her (following the letter of the NC state statute).

• Disclosure was made.


Mom’s Reply

“I am so happy it was only HIV. I was worried she had done something to harm herself. We are Christian and believe that if you kill yourself, you may not get into Heaven. I wish I lived closer to help her to accept her disease and get treatment. Thank you for caring for my daughter and for telling us the truth.”


Palliative Care, Hospice, and HIV

• Palliative Care is appropriate for patients of any age with any stage of a serious illness. It can be used concurrently with disease-directed treatment, including for patients likely to be cured of their disease.

• Hospice care is for those in the last 6 months of their life. It is focused on comfort and quality of life. Most hospice care is delivered in the patient’s home. 0.2% of all hospice patients have HIV.

http://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf


HIV Hospice Criteria

Prognosis 6 months or less. Supporting info:

1. CD4 <25 c/mcL or viral load > 100,000

2. At least one: CNS lymphoma, untreated or refractory wasting (>33% lean body mass), MAC bateremia, progressive multifocal leukoencephalopahy, systemic lymphoma, visceral KS, renal failure not desiring HD, cryptosporidium infection, refractory toxoplasmosis

3. Palliative Performance scale <50% (in chair/bed more than ½ the day)

http://geriatrics.uthscsa.edu/tools/Hospice_elegibility_card__Ross_and_Sanchez_Reilly_2008.pdf


Summary

• Ethics is hard• Per VHA, HIV testing should be offered once to those

age 18 or older and annually to high risk patients• VHA requires specific written consent to disclose HIV

status in most cases (exceptions apply)• Federal law offers clear surrogacy rules – know them!• Hospice care is appropriate for HIV patients with 6

months or less to live

• Even for adults, sometimes the imagined is worse than the real.

Thank you!

[email protected]

chris jones, md fvamc 6/5/2015 whatever you do, don’t tell my family: clinical ethics at the...

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