Paul Kalanithi's book, "When Breath Becomes Air" takes a deep look at what it's like to have a terminal illness and to explore one's own mortality. "Severe illness wasn't life-altering, it was life-shattering."
Paul's perspective on mortality is colored by his years as a talented Neurosurgeon, having to often face the terminal diagnosis and life-or-death choices his own patients have faced. "Like my own patients, I had to face my mortality and try to understand what made my life worth living." He shares with us a glimpse of life in medical school, and notes how it "sharpened my understanding of the relationship between meaning, life and death." And he poses important questions like, in the face of terminal illness, "What makes life meaningful enough to go on living?"
As a neurosurgeon, Paul's decisions must be made cautiously and with compassion. "Life and death decisions and struggles...surely a kind of transcendence." He shares the challenges of helping families make important decisions, such as, considering what the patient might want after a traumatic brain injury, "an easy death or to struggle between bags of fluids going in, others coming out, to persist despite being unable to struggle."
Paul describes his role not as "as death's enemy, but as its ambassador." "The call to protect life -- and not merely life but another's identity; it is perhaps not too much to say another's soul -- was obvious in its sacredness." This book read quickly and Paul's part was most eloquently written. We learn a lot from Paul, his compassionate care, and his journey through acceptance of his own mortality. Have you helped a friend or loved one face a terminal diagnosis? What was the most important lesson you learned?
“Although none of us get out of this world alive,
only 10 percent of us die suddenly, without any warning. What that means is
that 90 percent of us have the opportunity to think ahead, plan ahead, and make
our wishes for our unique last chapter”, says Maggie Callanan (2008). Sadly,
even with well-planned preparations, the wishes of the dying may not be
honored.
When my cousin Gus, was diagnosed with terminal
cancer, he shifted his entire focus on understanding his condition, researching
it, and sending voluminous emails documenting his experiences. As Maggie
Callanan (2008) notes, her advice to newly diagnosed patients is “to get a
small spiral notebook, about five by eight inches, and start keeping notes;
dates of doctors visits, lab work and medication prescribed, and important
contact names and numbers.” Having been a master planner, a calculating civil
engineer that reveled in the design and construction of large-scale dam
projects, Gus was this thorough and consistent in documenting his illness. Moira
Cairns (2003) says that, “the development of a death plan includes three parts:
the reflection, the construction, and the communication.” Gus sent the family
long reflective emails detailing his treatments, and later communicated his
personal plans and wishes for his impending departure.
Although death is a fact of life most people tend
to avoid discussing, Jean Shinoda Bolen’s notes in her 1999 book “Close to the
Bone” that “Life is a terminal condition, after all. It is a matter of when and
how we die, not whether we will.” So, estate planners and funeral directors
alike work to market the idea of pre-planned end to address peace of mind of
one’s survivors.
Gus
was a planner. Although he did not have a family of his own, he wanted to ease
the burdens of his passing on his four siblings, his cousins and his one and
only aunt. On more than one visit, Gus brought out a box of books detailing
exactly how he had wanted his affairs to be managed. The books contained his
estate planning documents, his will, his advanced directives, and other
instructions. The books included consultations with attorneys, but mostly Legal
Zoom documents, as Gus wanted to do as much as he could on his own. He wanted
us to know what the box looked like and where he kept it, so his wishes would
be followed. Gus had also saved the documents to the desktop of his computer so
that there would be redundancy. Yet, when Gus died all these documents vanished.
The box of Gus’ legal wishes went missing and the
documents disappeared from his computer. Not only were the documents all
missing but the titles to his vehicles had been mysteriously singed over to his
new “friend” John, a man he had met in outside the chemotherapy wing of a
cancer ward the year before. The cars and possessions which had been promised
to family, were either missing or granted to his new friend John. His home got
repossessed by his bank. Although Gus’ siblings tried to fight for them, the
attorney for the family said, it would be too difficult to retrieve the cars
because the titles were signed off on. He said it was a “hard case and the cars
had limited value.” It was very difficult for my family to accept that Gus of
all people could have been deceived.
Given
how intelligent and rational Gus was, no one in our family could have imagined
Gus being taken advantage of. Gus had everything planned from his estate down
to how he planned to end his own life if his suffering became too unbearable.
Such extensive planning and preparation made it difficult for anyone to think
that someone could take advantage of Gus, and yet that is exactly what
happened.
If it happened to Gus, it could happen to you.
“What a sad way….to die,” said Maggie Callanan recapping a similar dismissal of
one’s dying wishes in her 2008 book, “Final Journeys”.Callanan said, “She’d been so careful
to make sure her wishes were known. But she should have chosen someone…who
shared her philosophy.”Like
Callanan’s patient, Gus believed he had chosen a person who would carry out his
detailed wishes to the letter, but was terribly mistaken.
Perhaps Gus’s condition was to blame. In Moira
Cairns (2003) book, “Transitions In Dying & Bereavement, A psychosocial
Guide for Hospice and Palliative Care” she suggests that people “Patients may
be disoriented and need someone to help them make decisions.”Like Cairn’s advice, Marilyn Howell’s
book “Honor thy Daughter” (2011), describes how her daughter’s cancer left her
“more muddled, less able to think straight, and less able to decide what she
wanted…She needed someone at her side who understood the medical options and
had no financial interest in the choices.” But unfortunately for Gus, he lived
far away from family and refused their help. Without family around, and deep
into suffering with stage IV cancer, Gus accepted the help of his “friend”
John. We can only assume that his condition clouded his judgment. As Marilyn
Howell notes in her 2011 book, “paranoia and delusions were either the side
effects of [her daughter] Mara’s medications or the result of her tumors, which
produced chemicals that could have such effects on her brain.” This could help
explain why Gus trusted a complete stranger he met through a chance encounter
over his own family.
Initially when first diagnosed, Gus learned how
to navigate the health system well. As Callanan notes in her book (2008), she
recommends that healthcare workers “provide information on how to navigate the
system and link it to preexisting systems. For example, clarify the role of the
patient’s specialist and family physician, explain procedures, expectations,
and services available. When people understand how the system works, they feel
more confident and are better able to advocate for themselves.” Gus’ intellect
drove him to understand his situation thoroughly, and to become his own
healthcare advocate.
Gus was very independent. He demanded to live on
his own terms. He insisted he would fight his cancer initially. The odds were
in his favor. But, unlike Howell’s concern over the judgment had her daughter
“refused chemotherapy, how would we have handled the anger and judgment of
friends who believed nothing else could save her” (2011), Gus did not care
about others’ concerns. When it became clear that chemo was no longer working,
he decided he could no longer bear the treatments, which made him so
uncomfortably ill. As Callanan notes, “It is important to acknowledge the
difference between quality of life and quantity of life. It’s equally important
to understand the benefits and burdens of the decisions you make regarding
treatment” (2008). Most of us never questioned Gus’ decisions regarding his
health. Many in our family trusted he was well informed, and making decisions
based on weighing all his options. But others had a hard time letting go.My mother, who insisted in an email
begging him to “hold on for a cure” really angered Gus. Clearly, she didn’t
understand Gus' mindset or his condition.
In
her 1999 book, “Handbook for Mortals” Joanne Lynn, M.D. notes the risks of
leading patients to believe their condition is better off than it is. She
notes, “On one hand, you’re the doctor, and you want to provide hope,” but “On
the other hand, you can inflict a great amount of harm. There’s a great
potential to cause even more pain with pointless treatments.” Gus did not want
to be tied to machines to keep him alive. He was resolute that he was going to
stay home and die independently. On one visit Gus brought a case out to show me
his gun. It was new and I could not help but admire the design while
simultaneously feeling horrified that he was thinking of taking his own life.
But he told me there wasn’t anything to worry about; the gun was simply an
insurance policy that gave him comfort. He wanted the assurance of a quick way
out should his suffering become too unbearable. Author Neal Nicol states, “The
law does not recognize mercy killing as a reason to kill somebody” (2006). Part
of me wanted to take the weapon from him, but I felt that it was not my place
to do so. Only he knew what he was going through and if I were in the same
situation I might feel the same sense of comfort in holding such a weapon.
Lucky for us, this never came to pass. Thanks to hospice and pain management,
he would feel well in control for some time.
In the end, Gus outlived his projected lifespan
by at least one full year. Toward the end of his life, a peculiar change
occurred with his communications. His emails emphatically rejected family
requests to visit. Later we learned that John was answering Gus’s emails and
managing his affairs while Gus was incoherent. Gus living so far from family
(roughly 4 hours away from his siblings) gave “caregiver” John the delay he
needed to negotiate Gus’ valuables before family could arrive. The legacy
Gus’ had intended to bequeath to his family vanished, while both the police and attorneys
would insist that this happens all the time and there was nothing that could be
done about it. It was a rude awakening to see how the dying can be taken
advantage of with no repercussions for the criminals who hurt them.
Moving on, the family could only move forward
with Gus’ final wishes for his remains. Gus wanted to be cremated and the
family found a local funeral home to take Gus and perform the cremation. Gus
was a big fan of Corona beer as it had been the drink of choice for all family
gatherings and parties. Thus, Gus asked that instead of being placed in an urn,
he wanted his remains to be placed in Corona beer bottles and distributed among
his siblings. Before he died, he told me he could not imagine a better place to
rest in peace.
Sadly, the caregiver theft in Gus’ final days has
tainted our final memories of Gus. It is difficult to put aside the frustration
and anger at how he was taken advantage of by his caregiver. While I realize
that this is not a unique story, it changed my belief in planning for my own
final days. I no longer believe that planning alone will secure that my own
wishes will be followed. I don’t have an answer for how to address this growing
problem, other than we need to do more as a community to be watchful of our
family, friends, and neighbors. We need to take steps to educate our community
to recognize the signs of thieves masquerading as friends. Those who prey on
the dying exist in every community and can only be stopped if we are watchful
and vigilant about protecting the dying.
REFERENCES –
Marilyn Howell (2011)
Honor Thy Daughter, A Family’s Search for Hope and Healing, Multidisciplinary
Association for Psychedelic Studies
Joanne Lynn, M.D. (1999)
Handbook for Mortals, Guidance for people facing serious illness, Oxford
University Press, USA
Maggie Callanan (2008)
Final Journey, A Practical Guide For Bringing Care and Comfort at the End of
Life, Bantam
Shinoda Bolen (1996)
Close to the Bone, Life-Threatening Illness and the Search for Meaning,
Scribner
Moira Cairns (2003)
Transitions In Dying & Bereavement, A psychosocial Guide for Hospice and
Palliative Care, Health Professions Pr
Neal Nicol (2006)
Between the Dying and the Dead, University of Wisconsin Press Terrace Books,
University of Wisconsin Press
Firstly, the weaknesses of all advanced directives forms are that they are paper forms that can be lost, damaged, or difficult to locate when the time comes. While tattoos are not for everyone, the story of Joy Tomkin in England, who had her DNR end-of-life wishes tattooed over her heart is intriguing. It’s a successful move as far as making her wishes known. I don’t think her wishes could be any clearer really. (See links below for photos and story.)
While the main goal of any advanced directive is to make one's end-of-life wishes known, we spent some time reviewing and weighing some of the benefits and weaknesses of the three most popular forms: POLST, 5 Wishes and an Advanced Directives form.
POLST
Benefits
• Form used statewide means that medical/emergency responders will be familiar with it.
• The bright colors of the POLST forms should make them easy to locate.
• The hotline that Oregon’s POLST answers is a secondary backup to the forms, which also helps to ensure that final wishes are honored.
Weaknesses
• As the form itself states "No form can address all the medical treatment decisions that may need to be made."
• It is meant for those who are already ill or at an advanced age. (Healthier or younger individuals are not able to make use of the form.)
• A physician is required to sign the form to validate it. (This means the physician must agree and confirm the patient’s wishes, or the patient will not be allowed to even file the POLST form.)
Advanced Directive Form
Benefits
• This form breaks down different stages of the patient’s health/illness into 5 categories: "Close to death", "Permanently Unconscious", "Advanced Progressive Illness", "Extraordinary Suffering" and "General Instruction"
• The form is clear, easy to read and follow, and seems the best choice for the patient to clearly check off his/her wishes with additional lines to add a extra instructions/information.
• Any two witnesses can sign for the patient to confirm his/her wishes (except his/her present doctor.)
• The patient can appoint a health care representative to make decisions for him/her.
Weaknesses
• This form may not be as familiar or visible t emergency responders.
• The form is not as succinct and straightforward as the POLST form.
Five Wishes Form
Benefits
• This form covers more of the patient’s needs: "medical, personal, emotional, and spiritual".
• It promotes dialogue between the patient and his/her loved ones.
• The form has a wide variety of treatments that the patient can simply cross-out if she/he disagrees with it.
• The form is aesthetically pleasing and includes convenient wallet cards.
Weaknesses
• There is too much text and the form takes up 12 full pages.
• This form would be difficult for medical personnel to follow.
• Some states require notarization in addition to 2 witnesses, making the form invalid without it.
Forms Best for Each Individual/Entity
• Best for Medical Personnel = POLST
• Best for Patient to fill out on his/her own = Advanced Directive
• Best for Assisting a Patient to fill out = 5 Wishes
Advanced Directives Discussion
Join us on March 29th, when we guest host Death with Dignity's TweetChat for a discussion on Advanced Directives. We hope to see you there.
http://www.deathwithdignity.org/TweetChats/
References (Read More):
Joy Tomkins Story - http://www.dailymail.co.uk/news/article-2034647/Joy-Tomkins-81-resuscitate-tattoo-chest-PTO-inked-back.html
POLST Forms - http://www.ohsu.edu/polst/programs/sample-forms.htm
5 Wishes - http://www.agingwithdignity.org/five-wishes.php
Advanced Directives - http://liv-will1.uslivingwillregistry.com/forms.html
