Sunday, March 9, 2014

Protect the Dying

                     “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