Aging in Place and Person-Centered Care: It’s About Love: Part I

What is “aging in place?’  Take a look at the 2012 Senior Law Handbook published by the Colorado Bar Association for some further information about this.     Aging in place means aging, coping with all of life’s challenges and frailties that the aging process can bring, while living in a home and supported by family and friends and community.  This “new” approach is quite old-fashioned, hearkening back to the days when elders lived among the general population, before “retirement communities” and a medical model for institutionalizing the sick and frail elderly.  But wait, there’s a lot more eighty- and ninety-year-olds on the planet, and what about those baby boomers?  Well, I’m not proposing any earth shattering solutions in this post; I’m just suggesting looking at a few things a bit differently.

The Colorado Coalition for Elder Rights & Abuse Prevention published their April-June 2012 newsletter  with the headline “Transforming the Culture of Aging: Self Directed Living in All Settings.”   Person-centered care for people suffering dementia is especially important in trying to hold the person “in their identity” their essential personhood, and not just putting them away in a place where they will be safe.  Person-centered care was developed by the late Tom Kitwood, a British physician who had some revolutionary ideas about dementia and how to support people suffering from dementia.  Read more about him here.    Bottom line for Kitwood’s approach is that personhood, human dignity – is unique and sacred.  This is a far cry from what many in our youth-glorifying and death-denying American culture espouse.  We tend to focus on the losses that an elder suffers over the course of their inevitable physical decline, and pity their loss of autonomy – regardless of the fact that our individual “autonomy” is largely a fantasy anyway.  Here’s a link to information about person-centered care and gaining in place relevant to dementia sufferers.    So what are we missing here?

We can start with looking at elderhood as a stage of human development, ala psychologist Erik Erickson.  His wife Joan Erickson published an extended version of “The Life Cycle Completed,” (published by Norton  in 1998), including her own chapter entitled “The Ninth Stage.”  She notes at the beginning of the chapter:  “we must now see and understand the final life cycle stages through late eight- and ninety-year-old eyes.”  Erickson at 105.  She characterizes “old age” as a stage of life that is focused more on loss (“dystonic elements”) at the expense of self-growth and expansion (“syntonic qualities”).  Erickson asks the question of how it is possible to send elders out “into the world” they had previously inhabited and into a facility to have physical (medical) care and comforts met?  This is a good moral question that we must continue to ask ourselves.

This standard of care is the prevailing standard for care of protected persons, incapacitated individuals for whom it is necessary for another person to make decisions about daily care.  These types of decisions are known as “substituted judgment” and are recognized by the law in both probate proceedings (for a ward or protected person in guardianship proceedings) as well as by agents and proxy decision makers under state law.  The “best interests” standard applicable to substituted judgment is touted as an objective standard.

So then why resort to institutionalization?  Institutionalization is less prevalent than it used to be, but why is it necessary? For a number of reasons obviously – among which there may be no alternatives.  From my personal experience visiting residents in skilled nursing facilities over the last seven years (as a volunteer para-chaplain), I can tell you that the people I see are there because they want to continue to live and the facility is their only viable option to provide necessary life-sustaining care.  Are there steps we can be taking as a society to more fully re-integrate the old of the elder population (people over 80)?  Absolutely.  Erickson proposes more parks in which elders can meet.   The next question of course is whether there will be an opportunity for them to be heard, to be recognized as bearers of wisdom, still having something to contribute.  Will anyone ask them or want to hear their stories?   This is the biggest hurdle as far as I can tell.  Why?  We have no effective model of “elderhood” in our country!

Joan Erickson focuses on the “doing” part of elderhood – to rise above, exceed, outdo, go beyond , to continue to create so that elders can continue to “become” – which she identifies cleverly as gerotranscendance.  Erickson at 127.  Yes, the “dance” is intentional.  How beautiful!  I have difficulties with her exclusive focus on the “doing” and “making” part of becoming who we are – what about just the “being” part that is really the focus of person-centered care – what does that look like?

Well, I’ve nearly run out of space for this post, but I will mention that this will be continued.  I’ll be taking an in-depth look at a book I’m reading right now called “Elders on Love: Dialogues on the Consciousness, Cultivation and Expression of Love,” by Kenneth Lakrits and Thomas Knoblauch, Parabola Books 1999. I end with a quote from much-loved author Paulo Coelho:

The wise are wise only because they love.

More about love and wisdom, particularly the wisdom of elders – in a subsequent post.

©Barbara Cashman     www.DenverElderLaw.org

Considerations for Estate Planning for the Terminally Ill

 

Life is unpredictable and uncertain – we all know this – but many of us struggle with these facts on a daily basis.  I think planning can help prepare all of us – whether we are healthy or ill – for the inevitable and help us take stock of what matters most in our lives.  Yes, I have even gone so far as to write about law as a healing profession in this regard!  When someone has been diagnosed with a terminal illness, the unpredictable and uncertain qualities of life take on a whole new meaning.  A conversation with a knowledgeable and sensitive attorney can help to provide individuals and families facing terminal illness with some certainty in a stage of life that is usually very difficult.  Confirming estate plans or making them for the first time, as well as making arrangements regarding health care matters like medical durable powers of attorney and advance directives, can contribute to precious peace of mind.  What many people tend to overlook is the value of this process and making the arrangements in advance.  Benefits for the ill person include a sense that “loose ends” are tied up, and a similar benefit for the survivors is gained by knowing that plans are in place and that there is a “known universe” of how to take care of practical matters after a person has passed away.  This leaves more space and time for survivors to grieve.  Fortunately, there are excellent resources in the Denver metro area to support individuals of all ages in the grieving process.  Check out the Heartlight Center, a great community resource.

What do the terminally ill need to consider?  Here’s a short list:

  • health care power of attorney (to name an agent to provide informed consent for treatment);
  • Colorado advance directives (living will);
  • the Vulcan green MOST form (Medical Orders for Scope of Treatment);
  • general (financial) power of attorney;
  • a will (to identify your beneficiaries and who will be the personal representative in charge of carrying out your wishes in your will);
  • a trust for minor or disabled children or for minor grandchildren.

These are usually not easy things to discuss, but most people benefit from this conversation and planning, coming away with reported peace of mind.  The legal issues may seem straightforward and they often are, but they may be entangled with emotional, financial and medical matters which tend to complicate things during a time of stress and anxiety.  I also recommend people facing terminal illness and their families take advantage of the many resources available to chart the difficult emotional waters of this time.  During the times when I was health care agent for my father, I found two books in particular very helpful.  One of my favorite books written by a doctor is Dying Well,  by Ira Byock, M.D., (1997) and another book of his I have blogged about is titled  The Four Things That Matter Most: A Book About Living.  The Four Things are about saying what really matters (“please forgive me,” I forgive you,” “thank you,’ and “I love you”)  before a person passes away, and Dying Well is about reclaiming dignity in the dying process and providing compassionate care for and presence with a dying loved one.

Another doctor/author I like is Jerome Groopman, M.D., who has written several books and is a contributor to The New Yorker . The Anatomy of Hope (on my bookshelf, about terminal illness) published in 2004, and Your Medical Mind,   published in 2011, about how to choose your medical decisions wisely, are especially helpful to individuals and loved ones facing terminal illness.

People facing terminal illness may not want to change anything about how they live their lives, or they may want to rearrange things entirely.  These are entirely individual decisions and each of us faces our own mortality differently.  Getting sound and sensitive advice about financial and legal matters as part of an estate planning consultation with an attorney can help bring some of the stress of the unknown into the “known world,” and ease the burden of uncertainty during difficult times.

©Barbara Cashman, LLC  www.DenverElderLaw.org

Looking at the End of Life – legal, medical and emotional considerations

What is a “good death?”  Well, it depends on who answers – a doctor, a patient, or a family member.    Planning may be very helpful, for those who are inclined to talk about such matters beforehand, and the planning process can be very helpful in light of the likelihood of encountering “unexpected events.”     Who decides this, how do we make the decision and why do we make a particular decision?  I know, this is a lot of questions . . .

The legal question of “who decides” is by reference to several factors that include: the ability of the person receiving medical care to provide informed consent; whether there is an agent under a medical power of attorney (Power of Attorney for Health Care) and who is a surrogate decision maker or a proxy decision maker  capable of deciding for someone.

The medical questions tend to arise from whatever sources inform our decisions around health care at the end of our lives.  Here’s a good question – do doctors die differently than the rest of us? The answer is more often than not “yes.”  What we can learn from them?  Carolyn McClanahan’s article in Forbes posted 3/2/12 read it here  is a good start.  Here is another article that highlights the fact that many doctors shun the treatments so frequently offered to patients and their families.   This is not an issue of doctors not following their own advice, patients and families choose which options will be selected – but instead illustrates that doctors tend to be much more realistic about likely outcomes for such medical interventions and often more concerned about quality of life.  But it’s not really quite that simple – is it? Doctors as patients and doctors as doctors are two different matters.  Illustration please!

Doctors giving a diagnosis of a disease that is terminal may be reluctant to deliver the bad news.   Another sad truth is that most doctors view death as a “medical failure” and as the hospital-based internist who wrote this article observes,  many family members of ailing elders look to doctors to “use their physician superpowers to push the patient’s tired body further down the road.”    Sadly, many adult children have a very difficult time “letting go” of a parent.  This is compounding situation to an already difficult scenario.

Now for the last question – the emotional considerations of end-of-life.  Here is a list of some facts, with emotional implications.

Death is real and we each face it alone.  If we have been living our lives, charting a course of changes throughout and experiencing the full range of emotions we are lucky to experience, we may feel better equipped to face or cope with another’s final change, the transition to death.  What are some of the feelings of those who face their death with ?

“soul needs” include feeling heard by others, feeling cared for and connected to them and emotionally safe to express feelings – basically what we all want while we are alive!

“emotional needs” can include addressing any or all of the following feelings:

 

being afraid to die;

they are a burden to caregiver, family or community;

that they missed opportunities and their life has been wasted;

wanting to contact former friends or estranged family members;

anger at being cheated out of the length of their life;

perception of being lost and alone, and desperate for someone to ask how they feel;

angry at or feeling deserted by God; and

desperate to die and “get it over with.”

 

Emotions can also spring from any of the five stages described by Elisabeth Kuebler-Ross: denial, anger, bargaining, depression and acceptance.

We can say goodbye to someone and make peace with them before it is too late.

I have mentioned Dr. Ira Byock’s “four things” to say in previous posts (and I’m sure I’ll mention them again!):

Please forgive me

                                I forgive you

                                Thank you

                                I love you

It’s best to think about this goodbye, because it will be the last one said to the dying person, and it will last the rest of your life!  In the meantime, keep talking to each other and asking questions – even if you can’t answer the question . . .

©Barbara Cashman, LLC