As attorneys working with the older population and with individuals with disabilities, we frequently encounter clients and client family members who face hospitalization and operations. Because this isn’t a “legal environment,” we’re typically not involved beyond the preparation of an advance directive or other document appointing health care surrogates.
Patient advocacy is nevertheless a growing need. We’re particularly well positioned to develop guidelines, at minimum, for our clients who face medical challenges.
I’m not suggesting that this type of support and advice is in fact or should be deemed legal advice. It isn’t. Rather, it’s vitally important information that we’re well equipped to offer in light of our experience dealing with health care systems and the vagaries of aging.
Patient Advocate’s Role
The hardiest among us find it difficult to be assertive and independent or to gather facts when we’re ill. The stress and anxiety of being ill are enough to keep us from functioning optimally at best. In addition, the hospital environment itself, perhaps unintentionally, strips us of our normal life role. We wear hospital gowns that are uncomfortable and too revealing. The most sophisticated and erudite among us are suddenly called by our first names, infantilized. A Nobel Prize winning client of my office, revered in the scientific community and always referred to as “Professor,” was suddenly called “Jim” by nurses, certified nursing assistants and other well-meaning hospital staff members.
So, it’s a multi-faceted challenge to ask the right questions and to protect ourselves.
While there are professional patient advocates who work in myriad settings, my focus is on helping families and friends with some tips about how to “be there” for their loved one when he’s facing hospitalization. To understand how important this is, one unfortunately has to understand that hospitals aren’t always safe havens. Far from it.
Clients Facing Hospitalization
Our clients are of all ages and health statuses—healthy, ill, injured, chronically ill, dealing with disabilities and/ or providing care for others.
We counsel all of them about end-of-life decisions. We help them express how they want to be treated when they can no longer make decisions. We encourage them to think about whether they want to be home or in a hospital when end of life is near; whether they want to be kept on life support and under what circumstances. We bring up many other issues that arise when someone has permanently lost capacity.
We push them to communicate to those closest to them, as well as to their medical professionals, their assumptions, thoughts, values and feelings.
We often know whether a client has a chronic or life-threatening illness, is about to undergo surgery and/or is facing an imminent hospitalization. These experiences are in the medical realm, and we may not be involved unless a specific legal problem arises or long-term care (LTC) costs are on the horizon. However, we’re in a position to offer help. Knowing at least some of the basics about patient safety allows the opportunity to provide practical, possibly life-saving advice at a time when it can accomplish the most.
Medical error. The unintended down side of medicine is the very real risk of being harmed by errors and certain practices that may occur in medical care and the institutions that provide it. The estimated number of deaths in the United States resulting from preventable medical error differs. But, whether we accept the Johns Hopkins patient safety experts’ number of 250,000 (or 700 deaths per day)1 or the Journal of Patient Safety estimate of 440,000,2 either number is too high.
Preventable medical error may now be the third leading cause of death in the United States—more than respiratory disease, accidents, stroke and Alzheimer’s.3
Countless others suffer illness or injury as a result of medical errors.4
Dr. Martin Makary, professor of surgery at Johns Hopkins University School of Medicine in Baltimore and leader of the Johns Hopkins research 5, explained that the category of “medical error”6 includes a wide variety of ills, both systemic (such as failures in communication during patient transfers to another staff) and individual (such as individual doctors’ mistakes). “It boils down to people dying from the care that they receive rather than the disease for which they are seeking care,” he said.7
The Leapfrog Group8 underscored the need for hospitals to make patient safety a priority. However, more importantly from our perspective, the authors indicated that it’s in our sphere as patients, family members and friends to “…protect [our]selves and [our] families from harm…”9
As a practical matter, family members and friends are well positioned to serve as patient advocates. They may be named in advance directives or other documents appointing surrogates in the context of medical care decision making. However, if they are, the directive can indicate the desire for help with the medical world even when capacity isn’t impaired or absent. Perhaps you can suggest a document that allows Health Insurance Portability and Accountability Act (HIPAA) authorization for those whom the client/patient trusts the most.
Prominent geriatrician Dr. Mark Lachs asserts, “As perilous as hospitalization can be … I firmly believe that there is no health-care venue where laypeople—patients, families, concerned friends and neighbors—can have a greater impact on improving outcomes of care.” 10
That’s because many of the dangers of hospital care aren’t a result of technical procedures and tests. Most of the time those are done well. The devil, as they say, is in the details—those that occur before, after or in between the procedures or surgeries. Errors, as noted above, aren’t the only way that harm can be done.
The effects of hospitalization itself. Patients often suffer from being kept in bed too long, from confusion, even from malnutrition—all of which impair recovery. Concerned lay people can, among many other things, help to ensure that the patient is as mobile as soon as and as often as possible; they can facilitate communication and help to coordinate multiple medical professionals. Even a reminder to a staff person or a visitor to wash hands can be lifesaving. This simple measure can prevent a virulent hospital-acquired infection.
When family members or other caring individuals take such steps, they’re acting as patient advocates.
The Attorney’s Role The sheer number of clients we see who are facing medical issues, together with our awareness of the avoidable dangers of dealing with medical care, puts us in an opportune position to give practical tips and information that—while not legal advice—are uniquely valuable.
We can be proactive when a client or client family member faces hospitalization. We can encourage him to identify the best individual(s) who can help him survive a hospitalization and enjoy an effective rehabilitation experience. We can alert clients to their own and their family’s ability to facilitate recovery and avoid harm.
Sometimes it takes a village. A client may not have the perfect individual to advocate and otherwise watch out for her. Or, she may have one ideal advocate, but one individual alone can’t be there 24/7. Friends and family, as well as church and synagogue groups may be called into play to help. A professional patient advocate may be needed if no other resources present themselves.
Elder law and estate-planning attorneys routinely counsel clients and family members about health insurance, Medicare, Medicaid, HIPAA, medical malpractice, asset preservation in the context of LTC and other matters. Attorneys tend to become involved in the health care setting only when problems arise. They become involved reactively.
I suggest that attorneys become much more proactive, offering clients practical, fact and research-based advice and information to equip them to serve as advocates for their family members. Give this advice and information, in particular, to individuals named in advance directives. Family members who’ll be present in the hospital room or at doctor visits should be similarly educated and empowered.
In addition, you should add “patient advocacy” to your arsenal. Nothing prevents you from including it in your consultations, your correspondence or even your document preparation. It will expand your practice. It will add to the quality of health care for your client community as well.
With this in mind, I share a typical handout for you, the practitioner, to expand, edit, adapt and distribute to appropriate clients and family members. (See “Sample Handout,” this page and “Sample Pre-hospitalization Letter” )
1. “Medical error—the third leading cause of death in the US,” BMJ 2016; 353:i2139 (May 3, 2016), http://dx.doi.org/10.1136/bmj.i2139. Analyzing medical death rate data over an 8-year period, Johns Hopkins patient safety experts calculated that over 250,000 people die each year due to medical errors in the United States.
2. http://journals.lww.com/journalpatientsafety/Fulltext/2013/09000/A_New,_ Evidence_based_Estimate_of_Patient_Harms.2.aspx.
3. Supra note 1; www.hospitalsafetyscore.org/newsroom/display/hospitalerrors-thirdleading-causeofdeathinus-improvementstooslow. Some argue that this estimate is too high, but that the real problem is a failure of the medical system to handle complex care. Seehttp://blogs.scientificamericancom/guest-blog/the-real-cause-of-deadly-medical-errors/.
5. Dr. Martin Makary’s research involves a more comprehensive analysis of four large studies, including ones by the Health and Human Services Department’s Office of the Inspector General and the Agency for Healthcare Research and Quality that took place between 2000 and 2008.
6. “Medical error” has been defined as an unintended act (either of omission or commission) or one that doesn’t achieve its intended outcome, the failure of a planned action to be completed as intended (an error of execution), the use of a wrong plan to achieve an aim (an error of planning) or a deviation from the process of care that may or may not cause harm to the patient. Patient harm from medical error can occur at the individual or system level. The taxonomy of errors is expanding to better categorize preventable factors and events. I focus on preventable lethal events to highlight the scale of potential for improvement. See supra note 1.
10. Mark Lachs, M.D., What Your Doctor Won’t Tell You About Getting Older: An Insider’s Survival Manual for Outsmarting the Health-Care System (2011).