Yesterday the New York Times published this story with the headline: “More Men Take the Lead Role in Caring for Elderly Parents.”  Though nowhere near 50/50, the workload seems to have shifted significantly away from female siblings and onto their brothers.  Of course, this only makes sense.  Women, especially those with children, continue to suffer under the expectation of being the center of the family unit.  Between working, running the household, maintaining the ties between distant and not-so-distant relations and the hundreds of other tasks that somehow elide the male gaze and attention in our society, it really is no wonder that some of the responsibility of taking care of an elderly parent will go to the men in the family.   

It reminds me of a blog post I read a few months ago.  Jane Gross writes The New Old Age blog.  One article, published in September, was titled “Dividing the Caregiving Duties, It’s Daughters vs. Sons.”  Ms. Gross actually received some heat from this one because she suggests the daughters should not “throw a feminist hissy fit” and focus on the importance of the work (taking care of elderly parents) instead of the thwarted expectations they might have of their poorly contributing brothers.  This post is not the occasion to take up that debate; however, the recent NY Times story and Ms. Gross’ comments do make me think about the importance of family involvement and planning for that involvement in long term care.  

Every professional in LTC knows there is a lot of guilt flying around when it comes to familes.  The daughter or son taking the primary caretaker role feels extremely guilty for putting mom or dad ‘in a home;’ the more absent daughter or son feels guilty because they have not helped more; mom or dad feels guilty because they require so much care assistance that their daughter or son cannot provide it anymore.  The band plays on and on.  I’ve seen in my own facility how all this guilt can manifest in some pretty strange behavior – – from the innocuous (family members’ inherently contradictory complaints) to the dangerous (residents misrepresenting their condition to nurses).   

One way to manage this guilt is through committed and deep involvement between the facility (or home health agency) and the patient family members.  An active family council can be a kind of support group for the caregivers/family members.  It can also be an occassion to channel the energy created by all of that guilt into something more productive: honoring the time remaining with an elderly parent by enjoying and helping them to enjoy their lives.  Even if the support is not as formal as a council, long term care facilities should take an active role in structuring care networks between family members and residents.  If the “dutiful daughter” and the “sainted son” can work together to improve mom or dad’s care, they may respect one another that much more.  It goes to the heart of what we do in LTC: care for the eldelry, care for families.

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The Dallas Daily News published a story recently featuring the emergent Long Term Care industry in Mexico.  (link here). What is remarkable about this story is that the newspaper was not discussing new developments in Assisted Living and Skilled Nursing Care in Mexico, designed for Mexicans, but rather new facilities built for the purpose of serving Americans who want to spend their senior years south of the border.  

The listed the pros (strong dollar agaisnt the peso, inclusive culture of long term care in the country, warm weather, little regulation) as well as the cons (little regulation, untested providers, far from family and friends).  The experts from the article seemed to think that servicing the long term care needs of Americans will not just be a niche marketing technique, but rather an entire industry.  As far as I’m concerned, the jury is still out, but the business model is intriguing.  Generally speaking, it is an application of so-called ‘medical tourism.’

I’ve written about this phenomenon with greater precision elsewhere (link here), but the broad strokes are, simply, using the economic inducements of cheaper medical care and exotic, vacation-like locales, to draw wealthy, western patients to poorer, underdeveloped nations for specific, acute medical care.  Most of these ventures have focused on providing surgery to the medical tourist patient, but I see no reason why the long term care industry cannot profit from the same underpinning economic advantages as the mega hospitals in Bangkok that offer hip replacement surgeries for a tenth of the cost as hospitals in the U.S.  

Such foreign provided care is not without problems (resident safety, payor sources, etc.), and the issues are much different for American citizens who intend to move to Mexico to remain rather than stay for a week of surgery.  However, these Mexican facilities may provide some much need dynamic competition to our home-grown long term care facilities.  This is a development I intend to watch very carefully.

Today I happened to read James Berklan’s Editor’s Note in Mcknight’s concerning the coming-soon Five Star rating system on CMS’ Nursing Home Compare website.  (full article here)  

He makes some awfully good points: the Five Star comparison makes already deceptive data even more important, the promised “phase two” changes that would improve the inherent flaws have no target date — so may never actually come about, it is unclear if there are any Five Star rated homes in the country under this scheme, etc.  

I’ve been tracking this 5 star rating system for some time now.  (In fact, until very recently, I was convinced the opposition would be able to continuously delay its implementation).  In that time, I think I have heard every argument against this system, including Mr. Berklan’s well-reasoned and well-written remarks.  What I have not heard is whether this 5 star system will actually affect the way potential residents and their families use the Nursing Home Compare website tool.  

The Nursing Home Compare tool, as it currently operates, is convoluted and not very user friendly. Adminstrator colleagues at other facilities complain to me that the Five Star system will confuse potential residents because it compresses dubious data into a relatively arbitrary star system; but I wonder if the charts and spreadsheets of the current system do not leave users jsut as confused?  I know DONs and Administrators who pour over each metric on the current system, looking for ways to improve overall care, as well as ways to improve key numbers over the direct competition.  But, I’ve seen no real evidence that residents and familes use the website as diligently.  They may look closely at a few key metrics, but there is little or no guidance over which spreadsheets identify “good care.”  If the current system creates arbitrary distinctions with an overload of data, is the new system which compresses data in order to create arbitrary distinctions really all that bad?  

Maybe a familiar and generally well-understood metric like a five star system will be a better occassion for resident and family education than the mountains of data the current Compare website offers.

Nursing home administrators face an unexpected ethical (and legal) dilemma when admitting new residents to skilled nursing care. The Nursing Home Care Act undercuts a traditional notion of informed consent in such a way that many residents may be admitted to a nursing home without ever consenting to treatment, or having a meaningful surrogate consent to their treatment. This is clearly an issue of nursing/medical ethics, as well as a font of potential legal liability for providing unauthorized care.

American health care law is predicated on the notion of patient autonomous-direction. Within this notion exist a number of inter-linked rights: the right to self-determination, the right to give consent before treatment, the right to information forming the basis of consent and many others. Curiously, in senior care, as in perhaps no other major area of American health care law, the status of patient autonomous direction, especially with respect to consent before treatment, is less sacrosanct, the exceptions more numerous. This is especially true in the legal quagmire of involuntarily placing adults in nursing homes.

I am most familiar with the Illinois Nursing Home Care Act and it will thus form the background of this discussion, but the Illinois Act is not dissimilar to Nursing Home Care Acts in many other states, at least inasmuch as the acts address the issue of involuntary admission. Clearly involuntary admission of a resident to a nursing home presents moral and ethical issues most families are not experienced in dealing with, not to mention attendant feelings of guilt for the family members and likely betrayal for the patient herself. However, for the health care provider, the nursing home, the struggle is a balance between determining the self-interest rights of the resident and the interests in rendering care.

Admission with Consent/Admission with a Surrogate’s Consent

In Illinois, the default position is that every resident, regardless of diagnosis or infirmity, is presumed to have the capacity to make her/his health care decisions. This includes admission into a nursing home. Providing nursing home care to a person who has capacity to refuse such care, and does refuse it, is paramount to a battery on the patient by the nursing home and would subject the home to potential liability. Determining incapacity is generally a court adjudication, relying in part on advice from a physician, looking at the patient’s ability to make decisions, understand the consequences of one’s own actions and comprehension of one’s diagnosis. If a court determines a person does not possess the capacity to give consent to health care, then a guardian will be appointed to that person to make decisions regarding the person’s health care.

Interestingly, a guardian cannot make the determination to admit her charge into a nursing home unless given express authority by the court to make such a decision. Thus, it is possible (and happens often enough to be noteworthy) where a guardian (usually a family member) who made the decision on behalf of her charge to admit the patient into a hospital must seek specific direction from the issuing court to admit her charge into a nursing home upon discharge from the hospital. Support for this position is fairly widespread and is a outgrowth of the importance of autonomous determination in American health care. In brief: nursing home care is seen as different enough from other provider types, that the type of front-line health care that a guardian usually makes decisions on (administration of prescriptions, whether to have certain hospital-based treatments, etc.), that the decision to admit a patient into a nursing home represents in effect a different, more substantial level of capacity for the court to determine.

Assuming a guardian is granted the authority to admit her charge into a nursing home, this consent will suffice to protect the nursing home from liability, regardless of the manifest wishes of the patient. Yet, the Illinois Act allows for different surrogates other than those specifically appointed by the court to contract with nursing homes for the admission of their charges or wards. A resident may plan for her own incapacity, and avoid the lengthy process of court-ordered and controlled guardianship, by designating a surrogate using a Durable Power of Attorney for Health Care. The Illinois Nursing Home Act creates a statutory form that families can use, although the statutory form has generated many criticisms from commentators because its confusing language may belie the “consent” such forms are supposed to evidence. Such surrogates can consent to nursing home admission so long as the Power of Attorney does not contain language that bars the surrogate making such a decision, either in the presence of manifest intent by the patient/principal, or under any circumstance. Barring this unusual direction in the document itself, a Durable Power of Attorney for Health Care is the most used and safest way residents are involuntarily admitted to nursing homes.

Chipping Away at Informed Consent in the Nursing Home Setting

However, in the absence of a legal surrogate relationship (either a court-directed guardianship or non-exempt Durable Power of Attorney for Health Care), the Illinois Nursing Home Care Act still allows some elements of informed consent to be chipped away. For example, a member of the patient’s family can contract for her admission to a nursing home on the patient’s behalf in the absence of her (the patient’s) positive, manifest consent. This contract is legally binding on the patient/resident so long as she does not object to it once admitted to the nursing home. Thus, a patient can be admitted to a nursing home, a major life change, even when no formal surrogate relationship exists.

The potential harm to patient’s rights caused by the loophole should not be underestimated. Going into a long term care facility represents a major life change for the resident. Generally, they are moving into a new and unknown environment while being taken care of by a physician and nursing staff. Once they are admitted to the nursing home, many residents may be hesitant to voice any objections to their admittance because of cultural imperatives that they do not disagree with medical staff, financial difficulties of living at home and the reluctance to go against the decisions of younger family members who have already arrived at the conclusion that the nursing home is the best place for their continued care.

By requiring only an objection to admission, rather than traditional informed consent, nursing home administrators may be severely impinging on the rights of the residents they serve.

Legal Analysis/Future Action

The legislative history of the Illinois Nursing Home Care Act is disquietingly silent on the issue of creating a statutory distinction between requiring consent for admission and mere objection. Some commentators have described this distinction as being, perhaps, only a scrivner’s error originally, but have harshly criticized the fact that the language creating the distinction has not been changed. They see this as a departure from the foundational premise of patient autonomous-direction.

Whether intentional or not, the artificial distinction serves to create wiggle-room in the informed consent arena that did not previously exist. Given the nature of nursing home care (i.e. a major life-shift for most residents who may be too vulnerable to actually object to admission once they are in the facility), such a distinction creates a potential liability problem for nursing homes and, more importantly, a major ethical concern for providers.

In Illinois this issue has not been addressed by the courts, though there is mounting pressure in the long term care community for some kind of legislative action. The convenience of family members being able to contract with long term care facilities in the absence of express, manifested informed consent by the patient goes against the long tradition of patient autonomous-direction in American health care. Involuntary admission to a nursing home is serious enough that it should be a deliberate decision, a willful cross of the intent of the patient with all of the moral and legal protections and processes that have been created to protect the rights of patients as much as is proper. It should not be a back door policy, a mere absence of objection.

Richard Susskind, professional futurist and this week’s attorney kill joy number 1, recently told the legal newspaper, AM LAW DAILY, that “the party is over” for lawyers.  Gone soon will be the enourmous salaries and juicy partner deals of big time corporate law for huge armies of lawyers.  Instead, he predicts the practice of the law will be relegated, primarily, to generalized, legal risk consultants.  

From anecdotal evidence, I can attest that the long term care industry’s recent push to hire health care lawyers for Admistrator’s position, is clearly in-line with this trend.  

Regluation on long term care facilities is up, corporate legal work is down.  The credit crunch is souring the growth of business sectors (like corporate law) which require workers to spend massive educational outlays before joining the work force.  I forsee more lawyers managing highly regulated businesses, especially health care service providers like nursing homes, in the not so distant future.  Any Administrator who has tangled with state surveyors over the interpretation of FTag guidance can attest, reasoning and argumentation skills are very useful in our business.  If Susskind is right, then more lawyers will be joining the Administrator ranks.

The much maligned Terminal Patients’ Right to Know End-of-Life Options Act has finally passed in California.  This was a law that was blasted by critics from every side when it was first introduced.  The final version, which takes effect on January1st  of 2009, creates a legal right in patients at that end of life to have access to information about number of end of life issues.  Included in these are Advance Directives, Hospice care, and pain and symptom management. 

Major opponents of the original language of the bill (which required doctors to discuss palliative care and refusing artificial hydration and nutrition for any patient with a prognosis of less than one year) worried that end of life patients would be given too much overwhelming information.  They feared the patient would not have a meaningful conversation with their doctor, and would only suffer mental distress when the physician ran through a checklist of end of life issues. 

The new language gives more discretion for when the conversation must take place and what is involved in it.  Essentially, the new law creates a right that can be engaged by the patient (they ask their doctor) instead of existing passively (the doctor gives the information whether solicited or not).  

This legislation is really the first of its kind in the US, but the changes in the law will probably not ensure information to a patient who wasn’t already going to get it.  What it does do is put end of life issues in the vanguard of legislative concerns – a turn of events which is both welcome and sorely needed.