Category Archives: Mysteries and the End of Life

Health Care Power of Attorney, HIPAA and Hospice

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When someone asks me what a health care power of attorney or MDPOA (medical durable power of attorney) is for, it usually takes a bit of an explanation.  Sometimes I will talk about the roots of “informed consent” in medical treatment deriving from the Nuremberg trials.   World War II tragically produced many sound principles of international law.    In our country, we sometimes speak about rights and autonomy in the context of medical care, but longevity and medical advances have provided a new proving ground for patient autonomy.  We have the right to decide alongside the right to not decide.  Beyond the advance directive, which seems to have its own well-run PR department, few people are aware of the MDPOA and its significance and utility in today’s world of medicine.  Making treatment choices in advance becomes particularly important when a frail elder and family members face difficult decisions about treatment choices.  These matters are often made more difficult by the way our health care “system” works in this context, the Medicare context, where doctors are paid per intervention, often leading to worse outcomes for patients  those patients who tend to be over treated.  Indeed, when people make their wishes known to family member and empower another to decide for them in a MDPOA , that empowerment alone can often lead to better outcomes.    So empowerment about health care decisions, considering the “what happens if. . . “ along with the “what happens when. . . . “ can help give our lives meaning by considering the end of our lives – not just as a cessation of life but in the context of its meaning.

I’ll quote Ralph Waldo Emerson here

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
Whatever your purpose is, make sure that you have the difficult conversation in advance.  It will ease your mind and the minds of your dear ones.  They will know what you want and will be much less inclined to select by default the heroic and futile medical interventions that are so often based on guilt, guilt flowing from the lack of knowledge of what the person would have wanted for themselves.

On the less philosophical and more practical front, whatever the documentary source of your MDPOA, you will want to ensure that it contains an effective HIPAA release.  Learn more about the Health Insurance Portability and Accountability Act of 1996 here.    Otherwise, your appointed agent may have all the authority to make decisions for you but effectively no access to your federally protected health care information.  I was reminded of this a few years ago when I visited a client in the hospital.  I asked one of the nurses at the desk if they had a MDPOA form available and they gladly supplied one to me.  It did not contain any HIPAA release. . . .

Just because you are a family member doesn’t mean you have HIPAA authorization.  You might be familiar with the codes that many hospitals now use regarding access to information.  The best policy is to have a MDPOA with a HIPAA release.  An interesting detail on the HIPAA front. . . . .  This is a recent development that is interesting as it involves digital health information, also known as “electronic protected health information” or ePHI.  It is the first settlement on record of a breach involving a provider with fewer than 500 patients.   The hospice involved was fined as a result of the theft of a laptop containing ePHI on which it had not adequately adopted or implemented security measures to ensure confidentiality of ePHI it created, maintained and transmitted using portable devices.  You can read the entire Resolution Agreement here .   Hospice providers generally make home visits to their patients and this is a cautionary tale about the threats of portable medical care and home visits.

A couple helpful resources for Coloradoans looking for more education about MDPOAs and advance directives include pamphlets available from The Colorado Bar Association at www.cobar.org and information from the  Colorado Advance Directives Consortium at www.coloradoadvancedirectives.com

©Barbara Cashman     www.DenverElderLaw.org

 

The Heart and Valentine’s Day from an Estate Planner’s Perspective

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                      “Life is never made unbearable by circumstances, but only by lack of meaning and purpose.”

― Viktor Frankl

Valentine’s Day is all about love, chocolates, flowers, etc., but I won’t get into any of its historical (or commercial) origins.  What has happened to the entire month of February, thanks to Valentine’s Day, is that there is a focus on the heart for the entire month.  The heart as in that blood-pumping organ that keeps us alive. . . . Yes,  the Centers for Disease Control have declared February American Heart Month, an opportunity to increase awareness about heart disease and its prevention. My personal favorites in this regard are dark chocolate and red wine, but don’t get me started on chocolate.  The American Heart Association has a particularly helpful page for women to recognize signs of a heart attack.  The symptoms for women are qualitatively different from those of men.  Okay, so if we’re talking about the heart, we’re not far off from the life-sustaining liquid it pumps throughout our body: blood.  February is also blood donation month.  Really – you can confirm it here.   If you are interested in donating blood, Bonfils Blood Center has several locations throughout the metro area, making it easy to donate. You can go on their website to determine your eligibility and where to donate.  Okay, so what does any of this have to do with estate planning?

Taking care of yourself through healthy diet, exercise and those sorts of things generally play out into better quality of life. And donating blood means making a contribution of  life-sustaining and life-saving blood to unknown community members.  Both are good for the heart and make us feel better.  I think the same can be said about living on purpose and making plans for incapacity (a certain uncertainty) and death (an uncertain certainty).  Having the “difficult conversation” about your health care choices and wishes – in the event you are unable to communicate or are incapacitated – can help inform the person planning as well as their loved ones about what is important in life.  In last week’s vlog post I talked a bit about the process of deciding and some of the resources available.  A primary reason I focus my law and mediation practice in estate and elder law is to help defy the taboo of talking about death.  Death is part of life, and just as a life has meaning, so can death.

“A good death does honor to a whole life.”

                                             ― Petrarch

So what about the fear of death?  Talking about it means getting past seven of the realizations that can lead, according to psychologists, to a fear of death.  They include an individual’s realization that:

  1. They can no longer have any life experiences;
  2. They may be uncertain as to what will happen to them if there is a life after death;
  3. They may be afraid of what will happen to their bodies after death;
  4. They realize they will no longer be able to care for their dependents;
  5. They realize that their death will cause grief to their relatives and friends;
  6. They realize that all their plans and projects will come to an end; and
  7. They may be afraid that the process of dying will be painful.

These are from an article I blogged about last year on Therapeutic Jurisprudence.  I recently came across an excellent short article in the Dec. 2012/ Jan. 2013  NAELA News magazine by Tani Bahti, entitled “Bury the Top Ten Myths About the Dying Process.”  Bahti, an R.N. and end-of-life consultant, gives an excellent list debunking some of the ideas we hold about the dying process.  I tend to think that much of our alienation of death is a recent phenomenon, ushered in with advances in medicine, pharmacology and longevity as a whole – many of us tend to view death as a medical problem, a failure of our system of keeping people alive for as long as they wish.  When so many of our loved ones die in hospitals, we often feel powerless and out of control, that there is nothing we can do.  But of course there is. . . .

Have the conversations, think “the unthinkable,”(death comes at the end of life)  and ponder the imponderable (whether there is part of us that survives death) and maybe these will enrich your life in some unforeseen way, or at least make it easier for your loved ones in the event something happens to you and – without that conversation – they might have no way of knowing what your wishes are.   Honor your heart and the hearts of others.

©Barbara Cashman     www.DenverElderLaw.org

 

 

End of Life Decisions – “When the Rubber Hits the Road”

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Yesterday morning, before my usual third Thursday meetings with other probate lawyers at the Colorado Bar Association, I attended a very informative discussion put on by Norv Brasch at Bryan Cave HRO entitled  “Estate Your Intentions: A Special Forum on End of Life Issues.”  It was an at-capacity crowd of hospice workers, health professionals, chaplains, other interested people and yes – a few lawyers. . .  Without going into much detail about the litigation that set the stage for the  initial case study discussion – let’s just say it’s themed along the same lines as Trygve Bauge’s frozen grandfather, the subject of Nederland’s “Frozen Dead Guy Days” festival and there was no shortage of morbid humor (mostly in the form of puns).

The broader and challenging issues are about the constellation of decision making and the alignment of actions by a diverse group of people to make end of life wishes “stick.”  When I talk to people about end of life issues, it is typically in the context of an estate plan, but it may also be in a more particular context of crisis planning.  Most people have heard of a “living will,” its technical term is “advance directive,” but it seems fewer people are familiar with the MDPOA – the medical durable (or health care) power of attorney.  The two documents are very different.  The advance directive has had much more press, having been the subject of several U.S. Supreme Court cases, the latest being the case of Terri Schiavo.

I have previously blogged about  the documents important for the terminally ill and everyone else.  The most important distinction to remember is that the MDPOA names a PERSON to make decisions for you if you are unable, while an advance directive is a document that comes into play in very limited circumstances and is a STATEMENT of wishes.  This is not to minimize the importance of having an advance directive, but rather to highlight the need for all of us who are able to

(1) name a health care agent of your choosing and

(2) have a conversation with that person about what you want them to do.

No one wants to accept a job, particularly one that may involve life-or-death decision making – without receiving some instructions first!  What does the failure to plan or name a health care agent result in? We don’t know until it happens, but it is typically decision by a hastily convened committee, often of people with diverse and conflicting interests.  It is not a happy time for anyone involved, and the failure to have the conversation and to make any plans only serve to complicate matters.

The panelists spoke about the challenges of having the difficult conversations about health care and the end of life.  Of course, none of us knows what the end of our life looks like, the where or when or how.  This difficult conversation that so many of us are reluctant to have often gets played out within the hospital setting when a frail elderly loved one breaks a hip or contracts pneumonia.  These seemingly run of the mill injuries and illnesses for the younger folks are still the primary causes of death in the elderly, so this serves to bring front and center mortality for the majority of us: advanced age.  All of our medical technology cannot save us from the inevitable – but what does the inevitable look like?  When do we accept that someone is dying?  Just because we don’t have hard and fast answers to those questions doesn’t mean we shouldn’t talk about them.  One of the panelists commented that “the last place you should be talking about end of life decisions is in your lawyer’s office. . . ” I heartily disagree.  I think having the conversation in your lawyer’s office is a perfect place and time to start the conversation – it is often while it is a more “theoretical” proposition and therefore less threatening. It is different when your lawyer talks to you about disability and death as distinguished from when you visit your doctor.  I have spoken to people about hospice and made the suggestion to consider it more carefully with persons in fragile health.  Is this something most estate and elder lawyers do? I doubt it! Is it part of what is the process of planning (with legal documents) for the inevitable? Absolutely!

The upshot from this great program is that people – everyone – need to talk to each other, to have the difficult conversations!  It is not just about getting the legal documents, medical documents and statements of your desires (which most people do not have). I can say that from my perspective as an attorney and as a mediator, it is about getting people involved with your decision making and making your wishes known so that there will be much less opportunity for guilt, conflict and recrimination among loved ones and family members.

Thanksgiving is an excellent time to remember to consider and say Dr. Byock’s four things

please forgive me

I forgive you

thank you

I love you

and maybe even have the conversation about final wishes.  It’s a holiday about gratitude after all, what more is there to be grateful for than our life?

©Barbara Cashman     www.DenverElderLaw.org

Can A Person Thrive in the Face of Terminal Illness?

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This may seem like a difficult question to pose, since much of the conventional wisdom in our death-fearing and death-denying culture encourages the terminally ill and their loved ones to put on “a game face” and “fight” until the bitter end.  Fight what exactly?  The inevitable?  What is the point in that – each one of who is living will die someday.  So how did we develop this idea that somehow “our disease” is not really our own but rather something that has come upon us to relieve us of what is rightfully ours, some perceived entitlement to a life that we have envisioned as how it is supposed to play out?  Many survivors of terminal illness mark the disease as a transformation in their lives, while others simply view it in the broader context of life.  Each of us has our own way of living just as we have our own way of dying.  It is no surprise that modern medicine’s advances have fortunately separated us from the specter of early death due to chronic diseases and conditions that can now be successfully managed to extend life.  These advances have often come at a cost of separating us from death, treating death as failure of medical treatment, not as the inevitable conclusion of a life well-lived.  In case you’re wondering, I’m talking about adults and elders, not kids or younger adults . . .

So back to the title of this post – I admit it is not original but comes from this recent post by Rick Reynolds.  This is a great post, his answer is a resounding yes .  He recounts the story of a young woman who committed herself to “thrive” in the face of her struggle with terminal illness.  She embraced her fear, her grief, and sent it on its way so she could get on with the real work of her life – thriving.  Reynolds, a hypnotherapist, noted that this woman  lived more life in the three years after her terminal illness diagnosis than all of his other clients combined.

In her groundbreaking work “On Death and Dying,” first published in 1969, Dr. Elisabeth Kübler-Ross identified the dying as teachers and went on to identify five stages of grief:

      1. denial and isolation
      2. anger
      3. bargaining
      4. depression
      5. acceptance

How can we work through the difficult words, feelings, and conversations;  what can we  say as the end of life nears?   Life is fragile and uncertain!  Acknowledge fear and embrace it.  Fear can diminish in size when it is appropriately regarded instead of viewed from a far off vantage point.   Acknowledging, naming and embracing the fear can dissipate anxiety.  We can pretend the certainty exists in our lives, or we can actively negotiate the uncertainty.  How do we acknowledge fear and embrace hope in the face of our own mortality? Practice!  Here I’m thinking of Dr. Jerome Groopman’s book “The Anatomy of Hope” (2004: Random House), and in particular chapter eight “Deconstructing Hope,” in which he writes about his meeting and interview with psychologist and professor Richard Davidson. )  Davidson is also associated with the Mind & Life Institute  an organization dedicated to promoting cross-cultural dialogue concerning the advancement of scientific and spiritual understanding of how our minds work.)  Groopman writes about Davidson’s definition of hope as a feeling that has both cognitive and affective parts, which work together to provide affective forecasting and is something that most healthy brains can relearn.  The Anatomy of Hope at 192-95.  Indeed, there is hope for hope. . .

More about fearlessness – in the face of uncertain future and, BTW, isn’t all future uncertain, by its very nature? I liked this post about what can be lost as a result of tragedy – this another lesson from 9/11.  Watch the video of 9/11 survivor Roy Cohen here.

What survives death? Death is a mystery, but most likely not the biggest mystery.  The biggest mystery is love.  This is the basis of human immortality, because love is the only thing that survives death.  I want to mention Warren Zevon’s song “Keep Me in Your Heart,” the song he wrote after his mesothelioma diagnosis.  It beautifully combines love and fearlessness.  You can listen to it here.    And speaking of heart . . .  it was the author of one of my favorite books – The Little Prince (I have it in different languages), Antoine de Saint-Exupery who noted:

 It is only with the heart that one can see rightly.

We are not powerless in the face of uncertainty.  We can offer words and presence.  Presence is a form of compassion, and we can offer both to those struggling through or being with challenges from an illness.  What kind of words? Check out this article about how to offer comfort to those nearing the end of their lives.

Where is a person at the end, and how did they get there? This is another great article by Paula Span in The New Old Age series in the NY Times is “Where the Oldest Die Now,”   which cites to recent evidence that more elders are dying in their homes than in hospital ICUs.  I think we can call this progress, progress toward recognizing the humanity of death.

Considerations for Estate Planning for the Terminally Ill

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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

Gratitude and Living Your Legacy Now

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photo by snowpeak

I guess I would say, as I have before in a blogpost tribute to a friend who died not long ago  that death can be a very powerful teacher for the rest of us who are still living.  What do our lives mean?  Does meaning matter in our lives?  Each of us answers that question in our own way.  I would like to defer to an expert here – Rabbi Abraham Joshua Heschel l who discusses this in the article “What Death Should Teach Us About Life and Living.”  One of the themes raised in Rabbi Heschel’s article is looking at death as gratitude for existence – how do we cultivate “heaven on earth?” He suggests that

the meaning of existence is to reconcile liberty with service, the passing with the lasting, to weave the threads of temporality into the fabric of eternity.  The deepest wisdom man can attain is to know that his destiny is to aid, to serve. We have to conquer in order to succumb; we have to acquire in order to give away; we have to triumph in order to be overwhelmed. Man has to understand in order to believe, to know in order to accept. The aspiration is to obtain; the perfection is to dispense. This is the meaning of death: the ultimate self-dedication to the divine. Death so understood will not be distorted by the craving for immortality, for this act of giving away is reciprocity on man’s part for God’s gift of life. For the pious man it is a privilege to die.

Now that we are all here, in the present – what does “today” mean to you? This Ted video is breathtaking, it has Louie Schwartzberg’s  time lapse photography of flowers, clouds and a story as well.  The story is about how we answer the question: What is a good day? His suggestion is to open your heart to all the gifts of life that this world is right now, go out and see them, let the gifts flow through you and bless others with your smile of gratitude and the presence of your open heart.  Watch it here 

I thank Joan Therese for sending this link to me.  The most exquisite pearl from this necklace?  Learn to respond as if today was both the first day and the very last day of your life.  Willa Cather’s quote comes to mind here: “I shall not die of a cold.  I shall die of having lived.”  If we die of having lived, can we not choose what to value, what to hold dear? An Albert Schweitzer quote comes to mind: “the tragedy of life is what dies inside a man while he lives.”

So  – how is it that we can live now, so that when our time comes (or we are with our dear ones and it is their time to leave) we can gracefully look back and say our farewells?  “We’re all here to do what we’re all here to do.”  The Matrix Reloaded 2003.  Each of us must discover that for ourselves.  This usually isn’t easy and it can take some time, but don’t wait until retirement to start this exercise – start small and do a little bit every day.  A little bit of what exactly?

Gratitude –

Did you know that gratitude is the only “get rich quick scheme that really works?”  That’s a quote of Ben Stein’s from the book “Thanks” by Robert Emmons.  This gratitude thing is also a two-way street, according to Zig Ziglar: “the more you recognize and express gratitude for the things you have, the more things you will have to express gratitude for.”

And speaking of being grateful for each day, here is a beautiful video about Lou Cunningham about her experience with coming to grips with her impending death and her experience with hospice. Watch it here   I particularly liked her portrayal of hospice nurses and support staff as midwives to the dying.  This is a term I have used before and I think it is very appropriate.  My favorite quote that she shared was from Ralph Waldo Emerson “all I have seen teaches me to trust the creator for all I have not seen.”  Acceptance of how things are often involves trust – trusting in the face of our uncertain future.

I couldn’t write this kind of a post without quoting Dr.Seuss!  “Don’t cry because it’s over, smile because it happened.”

Kindness –

This issue of the Health Care Chaplaincy e-newsletter is about compassionate end of life care for all patients and features bioethicist Stephen Post, Ph.D., author of The Hidden Gifts of Helping: How the Power of Giving, Compassion, and Hope Can Get Us Through Hard Times,   which is about the transformative power of doing good (transformative for the doer).  I wouldn’t want to leave out another favorite quote about gratitude – G.K. Chesterton’s “act with kindness, but do not expect gratitude.”

Being With Nature –

Along the theme of being in nature and cultivating the sense of wonder and gratitude as Schwartzberg’s Ted video, I found this recent article in Scientific American intriguing “How Hospital Gardens Help Patients Heal”

I’ll add more to this list in coming posts. . .  So if you really want to get hands-on with this kind of thing, like I suggested in an earlier post Write Your Own Obituary,  you may want to read Carolyn McClanahan’s 3/23/12 article in Forbes Magazine, the last of a four part series on end of life planning.    What she has to say about three funerals she went to in a short space of time is instructive: if you have an illness which allows you to plan for your funeral and service or celebration of life following your passing, do the planning to ensure it is something that will be part of the final chapter, a closing to your book of life, that only you can write.  May we all be able to live our lives “on purpose” and find the courage to ask, to be, and to reach out into community.

©Barbara Cashman, LLC  www.DenverElderLaw.org

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

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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

Hospice Care and Quality of Life

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What is hospice care?  the word “hospice” comes from the Latin hospitium which the Romans used to describe as a place where guests were received with lodging and hospitality and they are believed to have existed since there were efforts to care for the sick and dying.  The pioneer of the modern hospice movement in this country was Dr. Florence Wald, who joined a group that formed Hospice, Inc. of New Haven, Connecticut, the first hospice in the U.S.  [From Hospice: Past, Future and Ethical Considerations, by Amy Corcoran and Jennifer Kapo in The Penn Center Guide to Bioethics at 775 (2009: Springer).

Why is it still so difficult for many people to talk about hospice care? I think the answer is simple – it has to do with our lingering taboo against open communication about death and the dying process.  I think this taboo is long overdue for being tossed out of our culture, and that is the reason for my writing about it.  Are you wondering about how hospice care is accepted in mainstream medicine in the U.S.? More information on the Medicare hospice benefit is available here  and did you know that over 90% of hospices in the US are certified by Medicare?

What is the difference between hospice and palliative care?  Both are focused on maintaining quality of life for the patient, and treating the person as an individual with dignity, and not focusing as a set of medical challenges to be overcome.   According to the National Hospice and Palliative Care Organization (NHPCO), hospice focuses on caring, not curing, and the care is usually provided in the person’s own home if possible, and in other instances may be provided in a hospital, nursing home, or freestanding hospice facility. The stated focus of hospice care is based on the belief that each of us has the right to die pain-free and with dignity, and to provide assistance to our loved ones to allow us to do so.  Hospice care often involves helping a person be comfortable by addressing pain management as well as physical and emotional suffering, and typically a team-based approach (doctors, nurses, social workers and chaplains) provide care for not just the individual but for their loved ones as well.  In addition to Medicare, hospice care is covered under most private insurance plans.

Palliative care is the medical term used for the kind of care provided for dying people in hospice care, but it also encompasses care at any stage of an illness or condition that addresses quality of life and managing physical and emotional pain and suffering associated with the illness. Unlike hospice care, palliative care can be appropriate for persons in any stage of a disease, it is care designed to relieve symptoms without having a curative effect on the underlying disease or condition.  Both hospice and palliative care focus on a person’s quality of life, but they are not the same type of care.

Searching for a cure at any cost and advocating heroic measures often take a steep toll in terms of quality of life.  It is a good idea to have a conversation about these matters in the context of making a durable power of attorney for health care or an advance directive.  If you are wondering about doctors in Colorado who provide palliative care, the Life Quality Institute  is a local organization that provides, among other things, educational presentations about end-of-life issues has a list of such providers available here.

Perhaps you are at a loss for what to say to a dying person, how to interact with them.  I liked the advice of Joan Halifax  who urges us to look beyond our own fears and into that person’s heart.  Her book, Being With Dying (published 2009is a beautiful work, and a pdf available here has some great ideas about how to use the gift of language to express ourselves, and the gift of presence to express compassion for a dying person.

I think my favorite book right now is The Four Things That Matter Most, by Ira Byock, M.D. (2004: Free Press).  Dr. Byock wrote the Foreward to Being With Dying, and he identifies the Four Things quite simply as:

Please forgive me.

I forgive you.

Thank you.

I love you.

Of course, the first thing he says after introducing these four things is not to wait until the end of someone’s life (often we have no idea when that will be) but rather that these things apply at any time during our lives.  They, like all the wisdom from many commentators on the end of life, have much relevance for the beginning and middle parts of our lives.  Can you imagine starting a conversation with a loved one with these words?  These words are powerful medicine!

April is Donate Life Month – Are You a Registered Organ and Tissue Donor?

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Have you seen the bumper sticker that says “recycle yourself?” perhaps not – it’s much more common to see the Donate Life license plates or the little red heart on your Colorado Driver’s License that indicates you are a registered organ and tissue donor.  April is Donate Life Month  – so please read on!  If you haven’t signed up yet because you still have questions about it, you can go here  to get the facts about organ donation.  Keep in mind that you should discuss with your family about the decision so they are clear about your wishes.  Why?  When you register by signing a donor card (on the Colorado driver’s license it’s indicated with a little heart with a “Y” in it just below your signature),  your family members will be clear about your wishes to donate.  If you’re a Colorado resident, click here to get information about how to register.   The Mayo Clinic has a good article here  busting some myths about organ donation, and the Donor Alliance recently released a local study conducted in Denver, Aurora and Pueblo.

A recent New York Times article is about a new policy in Israel that gives registered organ donors priority to receive transplants.   Israel’s change in policy was based was based on some unique facts of its religious population, but the cooperation of the religious communities resulted in a highly successful public awareness campaign, which swelled the numbers of registered donors.  Signing up for this is easy and you can save lives and enhance quality of life through a donation – signing up has never been easier, and this has increased the rolls of registered donors – but there’s still a long way to go.

There’s an interesting Pittsburgh Gazette article from February here and  Donate Life America, the national nonprofit that advocates for people to register as organ and tissue donors has been reaching its goals of adding donors in recent years, but it has set its goal for 2012 to register 20 million new donors.  Will you be one of them?  Talk about leaving a legacy! This is everyday heroism in action – turning tragic events into opportunities to save others’ lives.  Don’t forget to sign up!

Write Your Own Obituary

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Many of us who focus our practice on estate planning encourage our clients to write an ethical will or include a testament in their will. Is it “over the top” to write you own obituary while you are taking stock of what is important to you in terms of your property, end of life decisions and choosing trustworthy agents for your durable powers of attorney?  I would say no, not at all, and many people would agree.  What do YOU want to be remembered for?

You may have had the opportunity to write a funeral notice or obituary for a deceased parent or other relative.  For many of us this was quite difficult, so if we’re already doing the “heavy lifting” of making a comprehensive estate plan – why not include the obituary as well?  A helpful tip about writing your own obituary might include “remember, it’s not a job application,” so your résumé may not be appropriate; and you may want to think deeply about what you want to be remembered for – considering all the different people and facets of your life.  Click here for some helpful tips. If this still sounds like too much for you, you might consider taking stock of your life right now (after all, dying is part of life) or giving yourself another 20-50 years and coming up with an unconventional demise – as in another helpful article.  The writer Brad Meltzer’s Ted video is very thought-provoking, you can view it here and go through his exercise.  I like his legacy-based approach, which focuses not on what you did for yourself (your education, etc.) but what you did for others.

How to get started? You can stick with the more traditional template for the obituaries and funeral notices that you typically find in the newspaper, or you can go beyond that into what Meltzer suggests – look at your personal, family and community legacies (the “who” of remembrance), and beyond that into the “what” – the actions for which you want to be remembered.  Things like what you do for perfect strangers, for other people. Are you living what you want to be remembered for right now?  This is where the transformation can take place, because each of us has the choice about how we live right now, to be remembered for your kindness, acts or charity and the like – that is true immortality.  I think of G.K. Chesterton’s quote here: “There is a road from the eye to the heart that does not go through the intellect.”  I must thank Sue for giving me this idea for the post, in an  indirect sort of way.