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Abstract
This white paper, prepared by a working group of the Catholic Medical Association, provides a commentary on a new type of end-of-life document called a POLST form (Physician Orders for Life-Sustaining Treatment) as well as on its model (or “paradigm”) for implementation across the United States. After an introductory section reviewing the origin, goals, and standard defenses of the POLST paradigm and form, the paper offers a critical analysis of POLST, including an analysis of the risks that POLST poses to sound clinical and ethical decision-making. The paper ends with several recommendations to help Catholic healthcare professionals and institutions better address the challenges of end-of-life care with alternatives to POLST.
Notes
1 Pope Pius XII, in an address to anesthesiologists in 1957, introduced the term “ordinary means” to refer to forms of medical care that one is morally obliged to use (see The Prolongation of Life: An Address to an International Congress of Anesthesiologists, 1957); the terms “ordinary” (or “proportionate”) and “extraordinary” (or “disproportionate”) were elaborated in the 1980 document of the Congregation for the Doctrine of the Faith, Declaration on Euthanasia (sec. IV); the terms “ordinary” and “extraordinary” are also used in the United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Facilities (nos. 56 and 57).
2 Although POLST is similar in some respects to traditional Advance Directives (ADs), POLST advocates specifically state that POLST forms are not ADs (e.g., Coleman and Mclean 2012, see note 13, p. 65). This has important legal implications. Federal and state laws specifically direct that ADs cannot be required as a condition to receive health care. Most POLST programs contain no such patient protection. Without such protection, programs actually remove patient choice and control since a POLST could be required for admission or treatment.
3 Other factors include a mindset that treats patients as a collection of conditions that can be addressed without reference to the entire patient, and to the uncoupling of the economics of medicine where the payer is outside of the doctor–patient interaction.
4 We thank Ione Whitlock for much of the research contained in the next 30 footnotes.
6 Lee Lewis-Husk and Michael Garland, The First Decade, ed. Susan W. Tolle and Gary T. Chiodo (Portland, OR: The Center for Ethics in Health Care, Oregon Health Sciences University, 1999), p. 10; cf. Tolle and Tilden (2002).
7 Patrick Dunn of Good Samaritan Hospital in Portland, OR, and ethicist Michael Garland of OHSU and Oregon Health Decisions, convened the Health Ethics Network of Oregon (HENO) in the mid-1980s. Dunn wrote in 1992 that it was HENO that identified “a significant problem … at the interface between acute care and long-term care: residents’ preferences for emergent treatment.” Paramedics arriving at the long-term care facility were unable to find “an indication of the patient's treatment preference, either orally from the care providers, or from the medical record … HENO convened [physicians, nurses, long-term care providers and others] interested in this issue.” The MTC was devised “after considerable effort over a period of two years” (see Dunn Citation1992).
8 Dunn's (1992) article includes a copy of the MTC as it was in 1992: specified signature of “attending physician”; care level 3 stated “provide” (as opposed to “consider”) medical treatments; Section D directs “oral fluids and nutrition must always be offered.”
9 See “Milestones of the Oregon Polst Program (1990-Present).” In 1996, Dunn et al. were still calling it MTC, but says that focus groups had determined POLST was a better name.
10 The Center for Ethics in Health Care at OHSU is also the publisher of “The Oregon Death with Dignity Act: A Guidebook for Health Care Professionals”; see http://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-Guidebook.pdf. The interconnection between POLST and the right-to-die movement is very troubling; one POLST critic, who's undertaken considerable research on the links between the two, has said, “if you scratch POLST, you find right-to-die.”
11 The NPPTF recommends that local task forces include a “broad representation” of persons working in the field of health care, including representatives “from EMS, emergency department physicians and nurses, the state long-term care association, the state medical association, the state surveyors, the agency responsible for senior services, the state department of health, the state hospital association, home health association, the state bar association and the state hospice association.” Curiously, however, the national task force recommends that “representatives of the disability community or interested right-to-life organizations can be consulted as needed and may not need to serve on the task force” (emphases added). See http://www.ohsu.edu/polst/developing/implementation-steps.htm
12 POLST literature emphasizes the support of physicians, especially in collaboration with local medical societies and other physician-led groups. The support of non-physician health care workers is important, but physician support is “key to the initial institutional culture change … necessary to establish the POLST paradigm” Sabatino and Karp (Citation2011, 13).
13 Step 6 on the implementation check list states: “Train social workers, nurses, chaplains, and others to be advance care planning facilitators so that they are comfortable and knowledgeable discussing the POLST Paradigm form.” See http://www.ohsu.edu/polst/developing/implementation-steps.htm.
14 See “Program Requirements”; available at http://www.polst.org/develop-a-program/program-requirements/. Endorsed programs must also demonstrate that their forms meet several requirements. These are summarized in a power point at http://www.polst.org/wp-content/uploads/2013/02/hammes+requiredelements-of-a-revised.ppt and include the following: (1) form constitutes medical orders that must be followed by health professionals across the continuum of care, (2) form is standardized in format, color and wording; (3) form is primarily used with patients with advanced, progressive illness or those who further wish to define their preferences, (4) form may be used to limit treatment or to express a desire for full treatment, (5) form provides clear direction about the desired response if patient is pulseless and apenic, (6) form allows for clear directions about other life-sustaining treatment, (7) from transfers with the patient, (8) health professionals are trained to use the form, and (9) measures are made to monitor the success of the program and its implementation.
15 See no. 4 under “Program Requirements”; Level 3 and no. 1 under Level 4; available at http://www.polst.org/develop-a-program/program-requirements/.
16 Sabatino and Karp identify several examples of effective statewide end-of-life organizations: Coalition for Compassionate Care of California (http://www.coalitionccc.org), Idaho End-of-Life Coalition (http://www.idahoendoflifecoalition.org) Community-Wide End of Life/Palliative Care Initiative of New York (formerly A Better Way Coalition) (http://www.compassionandsupport.org), Tennessee End-of-Life Partnership (http://www.endoflifecaretn.org); see Sabatino and Karp (Citation2011, 13).
17 15 States: California, Colorado, Hawaii, Idaho, Louisiana, Montana, New York, North Carolina, Oregon, Pensylvania, Tenesee, Washington, West Virginia, Wisconsin, Utah; see http://www.polst.org/programs-in-your-state/
18 30 States: Alaska, Alabama, Arizona, Connecticut, Delaware, Florida, Georgia, Illinois, Indiana, Iowa, Kentucky, Maine, Massachusetts, Michigan, Minnesota, Missouri/Kansas (metro region), Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, North Dakota, Ohio, South Carolina, Texas, Vermont, Virginia, Washington, DC, Wyoming; see http://www.ohsu.edu/polst/programs/state+programs.htm.
19 Tolle and Tilden (2002, 316): “The Physician Orders for Life-Sustaining Treatment (POLST) Program was developed and implemented with support from The Greenwall Foundation. Studies of Oregon's progress and continuing barriers to advance planning were supported by the Meyer Memorial Trust, the Project on Death in America and NIH National Institute of Nursing Research (R01 NR03526). Dissemination of our findings has been supported in part by The Nathan Cummings Foundation and The Robert Wood Johnson Foundation.”
21 The website for Choice appears to be extinct. To view their website as it was in the late 1990s, visit http://web.archive.org/web/19961031150257/http://www.choices.org/.
23 See MergerWatch Fact Sheet at http://community.compassionandchoices.org/document.doc?id=413, authored by Elena Cohen, who was an attorney for the Society for the Right to Die in the 1980s, and is now with Compassion & Choices. Funding data are at http://www.nathancummings.net/Health_Grants_2005/CommCat-MergerWatch.pdf and http://www.nathancummings.net/health_grants/HPGLstNov06.pdf. It is not surprising that the POLST model is actively promoted by Compassion and Choices; see http://www.compassionoforegon.org/services/polst/
24 United States, Department of Treasury, Internal Revenue Service. “Return of Organization Exempt from Income Tax (Form 990-PF): Open Society Institute,” 990 Finder. Foundation Center, 2012. Web.
25 Grant #37343. Robert Wood Johnson Foundation., “Annual Report,” (Princeton, NJ 1998, 65). Report is available online at http://www.rwjf.org/en/research-publications/find-rwjf-research/1998/04/annual-report-1998-.html.
27 The first proposal for a legal document of the sort was advanced by the Euthanasia Society of America in 1967. The Society's lawyer, Luis Kutner, published an essay that year in which he argued that the right to refuse to be treated by doctors when in compos mentis, including with life-sustaining procedures, implicitly contained the right to designate in advance that consent to certain types of treatment should be terminated. Such advanced consent, or rather revocation of consent, would limit physicians from taking further action on behalf of patients’ lives “and the patient would be permitted to die by virtue of the physician's inaction” (Kutner Citation1969, quote on 551). Kutner proposed that the document should be called “a living will” (he also proposed the names: “a declaration determining the termination of life,” “testament permitting death,” “declaration for bodily autonomy,” “declaration for ending treatment,” “body trust”).
28 42 U.S.C. 1395 cc (a).
29 “POLST differs from an advance directive (living will or health care power of attorney) in that it is an actionable medical order dealing with the here-and-now needs of patients-it can build on an advance directive but can be created for patients without advance directives.” Charles P. Sabatino and Naomi Karp, Improving Advanced Illness Care: The Evolution of State POLST Programs (Washington, D.C.: AARP Public Policy Institute, 2011), available at http://assets.aarp.org/rgcenter/ppi/cons-prot/POLST-Report-04-11.pdf
31 “The La Crosse, Wisconsin program, operating regionally for several years, has developed a trained “facilitator” model that requires completion of an approved training curriculum by nonphysicians who then serve as facilitators for all stages of advance care planning, including POLST.” Sabatino and Karp (Citation2011, 24).
32 In 1991 four health systems in Wisconsin, Gundersen Clinic, Ltd., Lutheran Health System-Lacrosse (now Gunderson Lutheran), Franciscan Health System and Skemp Clinic, collaborated in a program called “Respecting Your Choices,” an aggressive advanced directive education program that included the training and sending out of approximately 120 local nonphysician educators. All health-care organizations had access to nonphysician educators. Over the course of the program, the prevalence of advance directive usage increased from 15 to 85%. 98% of the patients opted to forgo treatment. See review essay by Hammes and Rooney (Citation1998).
33 http://www.polst.org/develop-a-program/implementation-steps-and-materials; http://respectingchoices.org/training_certification/what_certification_is_right_for_me.
35 The POLST movement has been described as the “next stage” in achieving the intent of limiting undesired end-of-life medical care through advance decision-making; Meier and Beresford (2009); see also Tuohey and Hodges (2011).
36 Susan Tolle, Director of the OHSU Center for Ethics; her quote may be found at: http://blog.gormanhealthgroup.com/2012/03/14/oregon-leads-the-way-on-end-of-life-planning/
39 E. Christian Brugger develops this criticism in 2011 especially 158–161.
40 John Paul II, “Life-Sustaining Treatments and the Vegetative State: Scientific Advances and Ethical Dilemmas” (2004) (On the “Vegetative State”); available at http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html. This teaching was reaffirmed in 2007 by the Congregation for the Doctrine of the Faith (see Responses to Certain Questions of the United States Conference of Catholic Bishops Concerning Artificial Nutrition and Hydration, August 1, 2007 and incorporated by the United States Catholic Conference of Bishops into the Ethical and Religious Directives for Catholic Health Care Services (ERDs) in 2009 (n. 58); for CDF document see http://212.77.1.247/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_risposte-usa_en.html
41 This specific scenario was reported recently by a man whose father was choking on a piece of chicken. The nurse called frantically to determine whether to intervene: she was uncertain whether his status was “Do Not Resuscitate.” He was “Full resuscitation.” Fortunately she reached the son in time to successfully intervene. (personal contact, FLS).
42 CitationFagerlin and Schneider (2004, 30–42) observe that: “In pursuit of the dream that patients’ exercise of autonomy could extend beyond their span of competence, living wills have passed from controversy to conventional wisdom, to widely promoted policy. But the policy has not produced results… Even patients making contemporary decisions about contemporary illnesses are regularly daunted by the decisions’ difficulty… How much harder, then, is it to conjure up preferences for an unspecifiable future confronted with unidentifiable maladies with unpredictable treatments?”
43 See the insightful critique of this model by Perkins (Citation2007).
44 Flygt (2012, 47) misrepresents Brugger et al. by suggesting that they argue that “non-signature invalidates a POLST DNR order.” The authors never stated this nor was it their point. They questioned whether designating a patient's signature on POLST forms as merely optional eliminates an important guarantee of fully informed consent (see Brugger et al. (Citation2012, 2)). Flygt goes on to say something revealing. If non-signature invalidates a POLST DNR, he says, then “why doesn't non-signature invalidate a hospital DNR order, which is generally not formally consented?” [emphasis added]. Is he conceding by use of this analogy that the orders on POLST forms need not be “formally consented” to by patients in order to be fully valid?
45 Crafting POLST form language in this way is required policy cited by the National POLST Paradigm Program Requirements: “…Language in the forms should start with positive language. For example, the comfort measures description might read ‘Treat with dignity and respect. Keep clean, warm, and dry. Use medication by any route…’ In the comfort measures section, the forms should avoid wording that starts with negative language and suggests that care and comfort of the patient are not paramount, for example, ‘Do not intubate or transport….’ ” See http://www.polst.org/develop-a-program/program-requirements/ under “Form Requirements for Endorsed Programs,” No. 12.
46 The North Carolina MOST uses the more neutral term “medically administered fluids and nutrition.”
47 Concerns about physician controlled decision-making and loss of trust have led to a greater demand for patient information about illnesses and for patients to share in more decisions. This has evolved from most decisions being physician-directed to include various levels of patient preferences. The far end of this continuum is an expression of radical autonomy in which the patient may insist upon certain tests or procedures even when not medically necessary or refuse care altogether. Other steps have been defined in a shared decision-making continuum that gives more options for all involved (see Kon Citation2010).
48 AMA Code of Ethics, Opinion 8.08 (http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion808.page).
49 Emphasis added; available at http://www.ama-assn.org/ama/pub/physician-resources/legal-topics/patient-physician-relationship-topics/informed-consent.page
51 Facilitators increase utilization of advance directives in a given community. This was first demonstrated in 1991 in Wisconsin, where advance directive completion increased from 15 to 85% (Hammes and Rooney 1998); the effect was confirmed in a randomized control trial in Melbourne, Australia in 2010, where 84% of patients who, receiving advance care planning by “trained non-medical facilitators” (based upon the Respecting Patient Choices model, La Crosse, Wisconsin), completed advance directives, compared with 30% in the non-facilitator control group (see Detering et al. Citation2010).
52 Wisconsin POLST, West Virginia POST, Tennessee POST, Washington POLST, Pennsylvania POLST, Minnesota POLST, Louisiana LaPOST, Hawaii POLST, California POLST, Colorado MOST.
53 Respecting Choices (Citation2007), chapter 4.12. For example, a suggested training script involving decisions on feeding tubes states: “To assist you in making this decision, I'd like to give you some examples of the side effects that can occur because of receiving artificial nutrition and hydration. First, the artificial nutrition that is delivered through tubes often moves out the stomach and slips into the lungs, causing pneumonia. This is called aspiration. The artificial hydration that is delivered may also increase the amount of fluid the body has to absorb, causing extra fluid in the lungs, making it more difficult to breathe. The extra fluid also causes congestion in other parts of the body, causing pain and discomfort as well as the need to urinate more frequently.”
54 Respecting Choices, “Tube Feeding: What You Should Know,” fact sheet, 2011; one section reads, “You may have fears about not getting food or water. You may think you will starve or be uncomfortable. This is not true. When food and water are not given, you will die from your chronic illness. You will not feel hungry, and you will receive good care to make you comfortable”. This script has been prepared, of course, without actually knowing what diagnosis or illnesses the patient actually has, if any.
55 “Transforming Healthcare: Advance Care Planning”, Gunderson Lutheran Health System. Available at: http://www.gundluth.org/upload/docs/TransformACP.pdf
56 “Death Drugs Cause Uproar in Oregon”, ABC News, August 6, 2008. Available at http://abcnews.go.com/Health/story?id=5517492&page=1#.UHpgVI7Gbpg.
57 Response to What is POLST? at http://www.polst.org
58 See summaries of research studies at http://www.polst.org/?s=research and http://www.polst.org/wp-content/uploads/2013/02/POLST-Literature-Review.docx
59 In addition, they refused resuscitation 98% of the time, hospitalization and any medical interventions 62% of the time, intensive care (ICU) 92% of the time, potentially curative antibiotics 57% of the time and feeding tubes 64% of the time (only 2% opted for long-term use of feeding tubes); see Hammes et al. (2012), see p. 83 and table 3, p. 80; cf. Hammes et al. (2010).
60 Susan Hickman, Ph.D, “POLST Research and Evaluation” power point, slide three citing Meyers et al. (2004), available at http://www.slidefinder.net/p/polst_research_evaluation_susan_hickman/hickman-nhpco-research-slides-rev/28067343; and a description of the Meyers et al. study at at http://www.polst.org/wp-content/uploads/2013/02/Summary-Q-Washington-POLST-Nursing-Facility-Project.docx; the study itself was no longer listed on the updated web site's list of research studies in 2013 at http://www.polst.org/?s=research.
61 Although a 10% chance of recovery compared to certain death may seem low, in Martin v. Richards, 531 N.W.2d 70, 75, 192 Wis.2d 156, 167–68 (Wis. 1994), the Wisconsin Supreme Court held a physician liable for failing to disclose tests that could have been run to check for a 1–3% possibility of a brain bleed (a complication with serious consequences), after the patient later suffered a disabling stroke.
62 Fagerlin and Schneider, 2004. Fagerlin and Schneider, “Response to letter to the editor, A Viable Alternative to Traditional Living Wills from Hickman, SE et al.,” Hastings Center Report (Sept–Oct 2004), page 6. In 2005, the President's Council on Bioethics questioned whether living-will type of documents really ensure that patient preferences are honored: “Data from the Robert Wood Johnson SUPPORT study suggests that many patients filling out living wills are confused about what they are being asked to decide, and vague or misinformed about the purpose and effectiveness of the medical interventions they are being asked to choose among.” The Council argued that when people are healthy they may “incautiously” opt for death over disability. But when sickness comes and they are forced to face death, they often change their minds: “There is in fact an extensive body of research showing how poor we are at predicting our own preferences and desires, especially in regard to choices far off in the future. This inability is likely to be acutely present here, since we have no experience deciding how and when to die” (President's Council on Bioethics (2005). Taking care: ethical caregiving in our aging society, page 74. http://bioethics.georgetown.edu/pcbe/reports/taking_care/index.html.
63 Nelson and Tuohey 2011. From Q&A following presentation: Q: “If the patient completes a POA for health care and also completes a POLST, does the POA have the authority to override the POLST?” A: (Fr. John Tuohey) “Here, if the POLST is completed by a physician with the patient, that document supersedes all others. We would not listen to a POA regarding a POLST… As a practical matter, we advise that when a POLST is completed with the patient, the physician recommends to the patient that they inform the POA that they are likely off the hook now for any decision-making – they quite likely won't be needed.”
64 42 C.F.R. §418.3 defining “terminal illness” for purposes of eligibility for Medicare's hospice benefit.
65 POLST-Developing a Program, at http://www.polst.org/develop-a-program/program-requirements/ for Level 3 Endorsed programs and at #1 for Level 4 Mature Endorsed programs.
66 Fox Valley Coalition for End of Life, Basic Needs Giving Partnership Grant Application September 29, 2011 at pages 9–10; and a draft of the same dated September 1, 2012 at page 2; Briggs (2003). http://www.edc.org/lastacts.
67 Guidance for Oregon's Health Care Professionals (August 2011) at http://www.nursepractitionersoforegon.org/associations/11517/files/NPO_POLST-Guidebook2011V2FINALPOLST.pdf.
68 California Advocates for Nursing Home Reform (CANHR), Physicians Orders for Life Sustaining Treatment (“POLST”) Problems and Recommendations (2010) at page 5, available at http://www.canhr.org/reports/2010/POLST_WhitePaper.pdf.
69 Fox Valley Coalition for End of Life, Basic Needs Giving Partnership Grant Application September 29, 2011, at 9–10.
70 Respecting Choices Advance Care Planning Facilitator Course Manual, Chapter 5.
71 The National Nursing Home Survey: 2004 Current Resident Tables: Table 12 at http://www.cdc.gov/nchs/nnhs/resident_tables_estimates.htm#Demographics
72 Frequently Asked Questions about the Physician Orders for Scope of Treatment, FAQ #2 at http://www.wvendoflife.org/MediaLibraries/WVCEOLC/Media/professional/faq_post.pdf.
73 MOLST is the name for POLST in Delaware and New York. The expansion for people with mental disabilities and for children is contained in FAQ at http://delawaremolst.org/?page_id=30
74 Web site of Children's Hospice & Palliative Care Coalition (CHPCC): Events page available at http://www.chpcc.org/calendar/polst-beginning-the-coversation-for-pediatrics
75 Web site of CHCPP: About Us: Who We Represent at http://www.chpcc.org/about-us/
77 “The term MOLST is generally applied to an end-of-life document, which is intended to be portable and can be relied upon by any health care provider.” Letter dated November 14, 2012, from Division of Public Health Director to Health Care Providers, available at http://web.archive.org/web/20130115163536/http://www.patientsrightscouncil.org/site/wp-content/uploads/2012/12/Delaware_MOLST_11_12.pdf.
78 Md. Code Ann. [Health-Gen] §5-608.
79 NJ Legis 145 (2011) effective 7/1/12; future §§26:2H – 129 – 26:2H – 140.
80 OAR 847-035-0030 (6) regarding EMTs and OAR 847-010-0110 pertaining to physicians or physician assistants.
81 MD pending regulation Title 10 DHMH 10.10.21.04. Facilities include assisted living programs, home health agencies, hospices, kidney dialysis centers, and nursing homes. Note that although a MOLST form is required for each patient, the patient need only be offered the opportunity to participate in the process and no patient or surrogate signature is required.
82 Md. Code Ann. [Health-Gen] §5-608.1 (c) (3).
83 Md. Code Ann. [Health-Gen] §5-608.1 (d).
84 The law notes that a facility must comply except as provided in §5-611 (e) or §5-613 (a). Those provisions state that the health care provider need not comply if aware that patient disagrees with the action [§5-611 (e)] and that the provider who intends not to comply shall inform, assist in transfer and comply pending transfer if non-compliance would likely result in death [§5-613 (a)]. Note that this does not address a situation in which compliance would likely result in death.
85 OAR 847-010-0110.
86 OAR 847-010-0110.
87 OAR 847-010-0110, referring to ORS §127.625 (a) (c) and ORS §127.654 (1).
88 NJ Legis 145 (3f) (2011) effective 7/1/12; future §26:2H – 131.
89 NJ Legis 145 (0e) (2011) effective 7/1/12; future §26:2H – 137.
90 NJ Legis. 145 (9e (1)) (2011), effective 7/1/12; future §26:2H – 137.
91 “Federal law” would refer to the Patient Self-Determination Act of 1991, requiring that health care institutions inform patients of their right to accept or reject medical care offered to them and provide them with an opportunity to create an advance directive reflecting those wishes. It also requires institutions to state their policies regarding advance directives.
92 An example of this “everything” or “nothing” approach is seen in the PBS Television Religion and Ethics Newsweekly entitled “Advance Directives” (Oct 21, 2011) featuring staff and patient from Gunderson Lutheran Hospital, La Crosse, WI. http://www.pbs.org/wnet/religionandethics/episodes/october-21-2011/advance-directives/9748/.
93 Naomi Karp and Erica Wood, “Incapacitated and Alone: Healthcare Decision Making for Unbefriended Older People ABA,” Human Rights 31, no. 2 (2004), 20-24, available at http://www.americanbar.org/publications/human_rights_magazine_home/human_rights_vol31_2004/spring2004/hr_spring04_incapacitated.html.
94 Douglas Silverman, “Serving the Unbefriended Elder Population: Trends, Challenges, and Successes,” Power Point Presentation, 2011 Minnesota Age & Disabilities Odyssey, Mayo Civic Center, Rochester, MN June 21, 2011 accessed at http://www.mnodyssey.org/2011/PowerPoint/Monday/McDonnell-B/9-30am/SilvermanOdysseyFinal.pptx at slide 31. In a large study of ICU admissions at seven hospitals, attending physicians would have considered withdrawing life-sustaining treatment for 37 unbefriended patients if a surrogate had been available. These 37 patients accounted for 1.2% of admissions during the six-month period studied; twenty-five died in the ICU-fifteen after life support was withdrawn, ten died while life support continued. D.B. White, et al., “Life Support for Patients without a Surrogate Decision Maker: Who Decides?” Annals of Internal Medicine 147 (2007): 34-40.
95 This report is available at http://www.ltcombudsman.org/sites/default/files/ombudsmen-support/training/Informational-Brief-on-Unbefriended-Elders_0.pdf
96 Three approaches are offered for consideration by those seeking to address the health care decision-making needs of people thought to be unbefriended. Two programs address finding people before they become unbefriended in a medical setting and one links them to volunteer advocates afterwards.
(1) Next of Kin Registry. The next of kin registry (http://www.nokr.org) provides a free tool for securing next of kin information in emergency situations. The registry trains volunteers who visit with people and record their information which is then only shared with law enforcement, emergency responders and medical personnel. They have a faith-based sub-program, described at http://www.nokr.org/nok/restricted/faith.htm which appears to require a local government partner. It may be possible to link a program like this with one that would take the next step of helping people complete health care directives and appoint an agent.
(2) Minneapolis Volunteers of America Unbefriended Pilot Program. This pilot project was supported in part by grants from the Minnesota Department of Health Services (DHS) and a local foundation (Id. at 7-8). A 2011 presentation by the DHS grantor reported this project developed protocols to identify, locate and support family or decision-makers and served nearly 100 individuals in the metro area. Of those served, 63% completed a health care directive, 80% of which named an agent and 78% had a follow-up conversation with a doctor; (see Douglas Silverman, “Serving the Unbefriended Elder Population: Trends, Challenges, and Successes,” Power Point Presentation 2011 Minnesota Age & Disabilities Odyssey, Mayo Civic Center, Rochester, MN June 21, 2011, accessed at http://www.mnodyssey.org/2011/PowerPoint/Monday/McDonnell-B/9-30am/SilvermanOdysseyFinal.pptx).
(3) Indiana Volunteer Advocates for Seniors Program This program was founded by a Catholic healthcare system to provide volunteer advocates for unbefriended inpatients in hospitals, nursing homes and hospices. A volunteer advocate serves a patient for up to 90 days so as to avoid the need for a court appointed guardian. Volunteers carry out all the duties of a typical guardian except for finances, including ethical health care decisions and locating appropriate residential facilities for discharge planning. They are court-appointed as limited guardians and complete monthly reports to the court. This comprehensive approach requires volunteers to complete 40 hours of initial training and another 12 hours per year of continuing training. Limiting volunteers to health care decision-making and ethics, including communication within health care systems could limit training to a day or less. This program is partially funded by grants. (Information about the Volunteer Advocates for Seniors program is available at http://www.franciscanalliance.org/hospitals/hammond/services/seniors/vas/Pages/default.aspx)
99 This will also protect nursing and other staff from being forced to conform to POLST orders that violate their consciences.
100 United States Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Care Facilities (no. 24), 2009.
101 The PSDA requires most health care institutions (but not individual doctors) to provide patients at the time of admission a written summary of their health-care decision-making rights and the facility's policies with respect to recognizing advance directives; they must if patients have an AD, and document the fact in their medical record if they do; and they may never discriminate against patients based on whether or not they have an advance directive. It is against the law for them to require either that you have or not have an advance directive (see http://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/patient_self_determination_act.html).
102 See Stewards of the Gift of Life: A Pastoral Statement on Physician Orders for Life-Sustaining Treatment (POLST) from the Catholic Bishops of Minnesota, available at http://www.mncc.org/stewards-of-the-gift-of-life/
103 Oregon, for example, requires the following: “A physician or physician assistant licensed pursuant to ORS Chapter 677 shall respect the patient's wishes including life-sustaining treatments. Consistent with the requirements of ORS Chapter 127, a physician or physician assistant shall respect and honor life-sustaining treatment orders executed by a physician, physician assistant or nurse practitioner. The fact that a physician, physician assistant or nurse practitioner who executed a life-sustaining treatment order does not have admitting privileges at a hospital or health care facility where the patient is being treated does not remove the obligation under this section to honor the order” (Oregon Administrative Rule 847-010-0110: Physicians and Physician Assistants to Honor Life-Sustaining Treatment Orders).
104 One such document is available from the Patients Rights Council: http://www.patientsrightscouncil.org