CAPC Palliative Care Discussion Forum
Chaplaincy in Palliative Care Settings
I have just received an interesting consultation regarding a 50y.o. male with severe developmental delay/mental retardation related to an uncontrolled seizure disorder since he was one year old. Last month the patient had an emergency lap choley and was found to have mod. to poorly differentiated adenoCA of the gall bladder with spread through to the peritoneal fat. Unfortunately, no nodes were found in the surgical specimen so full staging could not be done. After complications of pneumonia, hypercalcemia and hypernatremia he was eventually returned to his care facility. Due to essentially no p.o. intake after his return there he was then re-admitted to my hospital for consideration of a PEG. He was also found to have aspiration pneumonia at the time and has been treated for this first before proceeding with the PEG. His attending hospitalist does not really want to proceed with the tube as the patient's quality of life would seem so poor now made worse by the cancer with potential for local and distant spread of the disease and later pain and suffering.
His medical care is directed by a Regional Center whose medical director is the agent for health care decision making. He wants the PEG placed unless definite metastases are seen by CT scanning. I, however, also have some concerns about whether that is in the best interest of the patient or not considering the overall picture of things.
IN SUMMARY, HOWEVER, (sorry about the long winded case presentation): Does anyone have any good resources for cases involving life long mental impairment and government(state/county/region) involvement? I am worried we may make decisions based more on an administrator's CYA concerns than the best interest of the patient. I am taking this to Bioethics but wanted some feedback if any is available prior to the next steps.
Terry VanAken, M.D., Medical Director, NorthBay Bridges, a Palliative Care Service of NorthBay HealthCare, Fairfield, CA 94533.
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Ethical issues with Severe Mental Retardation
First, thank you for applying your heart and skills to this case.
Medical professionals often resort to a 'default' position of treatment until the ethical questions or risks overwhelmingly indicate otherwise. The 'default' however should be NOT to treat until the potential benefits of the treatment can be shown to outweigh the risks. (i.e.Non-Malfeasance trumps Beneficence)
In this case, PEG tube placements have been shown to INCREASE mortality when used in intellectually disabled patients (and increased pneumonia, vomiting, etc..).
David Strauss et al has written a couple articles about this specifically:
Strauss, D., Kastner, T., Ashwal, S., & White, J. (1997). Tubefeeding and mortality in children with severe disabilities and mental retardation. Pediatrics, 99(3), 358-362.
Strauss, D., Eyman, R. K., & Grossman, H. J. (1996). Predictors of mortality in children with severe mental retardation: The effect of placement. American Journal of Public Health, 86(10), 1422-1429.
Ultimately, it is about suffering or its absence, not just lifespan and physical comfort. Artificial nutrition cannot offer significant benefit imho, and carries the almost certain risk of increasing suffering. The patient and the team would be best served having an equally engaging and passionate interdisciplinary discussion of how best to enhance the quality of the patient's life prior to his eventual death -- not just how to stave it off for some point down the road (at any cost).
Hope that is helpful to you. May your compassion for this case bring you blessings.
Tim Ford, Palliative Chaplain
Thomas Palliative Care Center
VCU Health System, Richmond, VA
Resources I have used include an excellent text by Dr. Bernard Lo: RESOLVING ETHICAL DILEMMAS: A GUIDE FOR CLINICIANS, 2005, 3rd ed., Lippincott Williams & Wilkins, Philadelphia, PA.
Also: Angus, F., & Burakoff, R. (2003). The Percutaneous Endoscopic Gastrostomy Tube: Medical and Ethical Issues in Placement. The American Journal of Gastroenterology. 98(2), p. 272-277.
Carrie Klotz, RN, MS, APN, CHPN.