Caregiving is Not for Sissies!

Sideways Sky

 

In my latest issue of Bifocal, the bi-monthly publication of the American Bar Association’s Commission on Aging, I noticed a helpful new resource entitled Ten Legal Tips for Caregivers. Here’s a link to the document.  In case you’re wondering who that “typical” family caregiver is, a recent New York Times article written by a resident physician, identified her as

a 49-year-old woman caring for an older relative — but nearly a quarter of caregivers are now millennials and are equally likely to be male or female. About one-third of caregivers have a full-time job, and 25 percent work part time. A third provide more than 21 hours of care per week. Family caregivers are, of course, generally unpaid, but the economic value of their care is estimated at $470 billion a year — roughly the annual American spending on Medicaid.

The comments section of this NYT article is both telling and heart wrenching, as there are so many stories of people who recount many of the article’s observations that this massive group of volunteer caregivers put themselves at risk in ways from which it may be difficult to recover.  There is the great financial risk, cutting back on work in order to care for an elder parent.  This financial strain is measurable but probably the more disturbing numbers comes from other studies concerning the lingering health effects (like depression, anxiety and chronic disease) of extended caregiving.  A JAMA article from 1999 entitled “Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study” quantify the heightened mortality rates of caregivers.

So, enough of this gloom and doom, eh? Don’t let me get started on how this volunteer army’s numbers will be forced to multiply dramatically in the event the Affordable Care Act, with its Medicaid expansion services which many seniors now enjoy, is repealed.  Considerable portions of the Medicaid programs for elders will likely simply disappear under the block grants which could replace the ACA’s funding of these programs, which has taken several years to put in place.   Changes to Medicare from the proposed legislation known as the AHCA could compromise Medicare’s viability in a shorter time frame. That’s another blog post!

Olay, so what steps can a caregiver take to protect themselves legally?  The tip sheet identifies ten different steps or competencies which the caregiver can utilize to better assist the elder for whom they provide care as well as to protect themselves:

  1. Understand decisional capacity
  2. Know what legal authority you have
  3. Appoint a health care agent
  4. Complete a financial power of attorney
  5. Manage Social Security/ Veteran’s benefits
  6. Know your rights of access to health care information
  7. Know the signs of abuse, neglect and exploitation
  8. Know your rights if you face Family Responsibilities Discrimination (a form of employment discrimination)
  9. Understand your rights under the Family and Medical Leave Act (federal legislation)
  10. Consider a Personal Care Agreement (to counteract some of the financial losses described above)

This tip sheet, like other public resources made available by the American Bar Association, contains useful and helpful information.  It is a welcome reminder for caregivers that they should not wait until a health crisis to figure out the basics of how best to provide care for their elder.  Making advance care arrangements and learning more about how to manage information and choices for another (using durable powers of attorney) can help take some of the anxiety out of the “what if’s” so many caregivers face on a regular basis.  Turns out that taking care of the caregiver allows for better care to be provided for the elder who needs care.  That’s all for now!

© 2017 Barbara Cashman  www.DenverElderLaw.org

 

Medical Aid in Dying for Dementia Patients Who Lack Capacity

A Maelstrom?

A couple days ago a bill was introduced in the Oregon senate (S.B. 893 – you can read it here) which would permit a patient’s expressly identified healthcare agent in an advance healthcare directive, “to collect and administer prescribed medication for purpose of ending patient’s life . . . if patient ceases to be capable after having received prescription for life-ending medication.”  [Thanks Jennifer for the heads up!] This bills extends Oregon’s medical aid in dying law (the Oregon Death With Dignity Act) to allow another person (“expressly identified agent”) to get the prescription for MAID and administer it to the person who lacks the capacity to arrange for getting a prescription for MAID and self-administering it.

The definitional section of the bill, which highlights the additions to the existing Oregon law, clarifies that “expressly identified agent” is an agent under a health care power of attorney.  The additions state further:

SECTION 3. An expressly identified agent may collect medications dispensed under ORS 127.815 (1)(L)(B)(ii) and administer the medications to the patient in the manner prescribed by the attending physician if:

(1) The patient lawfully executed an advance directive in the manner provided by ORS 127.505 to 127.660;

(2) The patient’s advance directive designates the expressly identified agent as the person who is authorized to perform the actions described in this section;

(3) The patient’s advance directive includes an instruction that, if the patient ceases to be capable after medication has been prescribed pursuant to ORS 127.800 to 127.897, the expressly identified agent is authorized to collect and to administer to the patient the prescribed medication;

(4) The medication was prescribed pursuant to ORS 127.800 to 127.897; and

(5) The patient ceases to be capable.

This is a huge departure from what might be called the “status quo” of the handful of states (and last month, the District of Columbia) regarding the legality and administration of MAID.  When I presented at the CBA/CLE Advanced Elder Law Institute last week on the new Colorado End of Life Options Act, I mentioned that something like this would be inevitable.  I had no idea that this bill would be introduced the following week!

This Oregon bill basically eliminates the requirement of mental capacity for a patient to be qualified to arrange for MAID.  The Oregon statute concerning health care powers of attorney can be read here.  So many concerns come to mind I can scarcely name them.  It makes the principal’s job of selecting the correct health care agent a matter of life and death – literally.

Dementia – of a variety of types – can often last for years, so perhaps it would not be so easy for a principal with dementia to be otherwise qualified under the Oregon law (with a terminal illness and not expected to live longer than six months) to have the health care agent end the principal’s life.  I’m not certain that diminishes my concerns.

What if there is a passage of years between the naming of the health care agent and the advance of a person’s dementia?  There is often a change of relationship that occurs during this time, whether it concerns a spouse, life partner or child.  How would this be accounted for?  There is no allowances for change of circumstances here.

This prospect of putting someone out of their misery might just be what my veterinarian meant (as she was administering the drugs to end my much-loved elderly dog’s life) when she stated “I wish we could do this for people.”  But there is of course the prospect (along with many examples over the course of human history, particularly recent history) of putting another person out of our misery.  How do we discern the difference in these circumstances?  I will write more on this topic later.

© Barbara E. Cashman 2017   www.DenverElderLaw.org

 

Springtime!

Fast facts about the Colorado End of Life Options Act

Where the Light Comes In

Today I’m presenting on this topic at the biennial Advanced Elder Law Institute, put on by Continuing Legal Education in Colorado.  It’s a two day program and I’m looking forward to it.  One of the best things about being a lawyer is I am always challenged to learn new things, as the law is – just like the rest of us – in a constant state of change and development!

As you may be aware, Colorado voters passed ballot initiative 106 last November and after certification of the election results by our Secretary of State, the law went into effect when Governor Hickenlooper signed it (by proclamation, in accordance with Article V of the Colorado Constitution) on December 16, 2016.  Colorado became the sixth state to have a physician assisted death law.  Other states with such laws include Oregon (the first state to have such a law) and Washington, where voters approved the laws as ballot initiatives; as well as Vermont and California, with their laws being passed by their legislatures in 2013 and 2015, respectively. Technically, Montana is also one of these states (by virtue of a Montana Supreme Court decision) but it doesn’t have any regulatory means of providing physician assisted death.

The title of the Colorado statute is the Colorado End of Life Options Act (EoLOA), but the terminology used for the death-causing prescription is “medical aid in dying” (hereafter MAID).

Unlike most statutes originating as legislation in the Colorado legislature, there was no preparation time for easing into this new law.  What are the implications of this?

Doctors have to get up to speed quickly on this new law.  They hold considerable power in this new law – they make the determination whether a person qualifies under the EoLOA as “terminally ill;” is “mentally capable” to request the MAID, get and fill that prescription.  Emergency rules had to be put in place by the Colorado Department of Public Health & Environment concerning the new law.  You can read the rules and download a couple of the forms on the CDPHE site.

There have been a number of complications with this new law and its immediate enactment.  The EoLOA is designed to cover all physicians and facilities unless there is a written policy notifying both patients and physicians of the facility’s policy to “opt out” of compliance with the law.  One of the challenges with simplifying this complicated issue of MAID in the initiative is that the law makes MAID available but there is no guarantee that an individual will have access to such MAID.  Several religious based systems opted out fairly early and there are other complications that have presented with other facilities.  Here’s a Denver Post article which speaks to some of those challenges.

An individual’s access to MAID may depend on where one lives.  Access may be more difficult in rural areas.  A local rural hospital board explained their “opt out” policy as follows:

The law requires that hospitals opt in or opt out of the practice; participation by hospitals and physicians is voluntary.  In December, YVMC’s Board of Trustees decided to opt out of participation in the End of Life Options Act at this time. This is due largely to the number of standards that must in place to meet both the requirements of the law and the needs of patients. The Board of Trustees, along with YVMC’s Ethics Committee, will continue to review the End of Life Options Act and will keep the possibility open to opt into the End of Life Options Act at a later date.

Because of this decision to opt out, patients are not permitted to self-administer medical aid in dying medication on YVMC’s premises, nor are employed or contracted physicians permitted to write a prescription for medical aid in dying medication for an individual who intends to self-administer medical aid in dying medication on YVMC’s premises.

Colorado is not the only state experiencing these difficulties.  Here’s a recent NY Times article on aid in dying and access difficulties.

I’ll close with three “tips” regarding MAID and minimizing conflict at the end of life:

  • Talk to your doctor and find out what all of your options are
  • Talk to your family and loved ones about what you might decide to do
  • Don’t wait too long! The MAID process takes at least two weeks….

© Barbara E. Cashman 2017   www.DenverElderLaw.org