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
Last week, New Jersey cleared a Death with Dignity bill, Assembly Bill 3228, to reach their full assembly for a vote. Sadly, most of the
nation still does not have Death with Dignity laws to protect patient choices. For
example, in California where my grandfather died last year, there is no law
protecting Death with Dignity. My grandfather had been ready to die and said as
much. Following the death of my grandmother, he lost the will to live. He was
unable to swallow foods or drinks anymore, and would have died had my mother
not consented to a gastric feeding tube. He was losing consciousness, said
goodbye to us, and he would have died in sedated delirium, but a feeding tube
was inserted which re-nourished, and brought him back to suffer for an
additional 2 weeks. My mother's belief system forced her to make the decision
to keep him going, and he suffered until his death as a consequence. Some years
ago my grandfather-in-law was determined enough to pull out his life-sustaining
IVs, oxygen and feeding tubes in three separate incidents, only to have
hospital staff reconnect him each time. His wishes were to die at home and not
to be kept alive by machines.
The Oregon “Death
with Dignity” law while progressive, could do more to protect patient choice
for comfort in dying. First, the patient must be deemed “capable” of making the decision to use the Death with Dignity Act. Secondly, the physician may refer
the patient for psychiatric or psychological counseling if the physician
believes the patient has a psychological disorder or depression. When this
occurs, “No medication to end a patient's life in a humane and dignified manner shall be prescribed until the person performing the counseling determines that
the patient is not suffering from a psychiatric or psychological disorder or
depression causing impaired judgment [1995 c.3 s.3.03; 1999 c.423 s.4]”.
Additionally, there are also waiting periods between the patient’s initial oral
request and the writing of the prescription. The patient must ask for the
prescription orally, then submit a written request, and then reiterate an oral
request to his/her attending physician at least 15 days after making the initial oral request. When one considers the fact that most patients want to
live as long as they can, and enjoy what time they still have left while
they’re still lucid and able to do things themselves, it’s easy to see why
patients can often wait too long to use the law. With the law’s restriction on
administration of the medicine being allowed only by the patient
himself/herself, oftentimes the patient has become so weak that he/she cannot
self-administer the medicine without assistance. At this point, because the law
states that no one can administer the medicine to the patient but the patient
himself/herself, the patient is no longer able to use the law. Even a doctor
cannot be involved at this point. If a doctor were to administer the final
medication to a patient he/she could be charged and imprisoned.
Although advanced
directives are important legal measures to document your end-of-life wishes,
the truth is that health care facilities do not have to honor a patient’s
wishes. According to “The Patient Self-Determination Act” there is nothing in ORS 127.646 to 127.654 that
requires any health care organization, or any employee or agent of a health
care organization, to act in a manner inconsistent with federal law or contrary
to individual religious or philosophical beliefs. No health care
organization shall be subject to criminal prosecution or civil liability for
failure to comply with ORS 127.646 to
127.654. [1991 c.761 §4]. Also a lesser-known issue
is that between hospitals and medical facilities, there is often an unsaid code
of respect for when a family has been denied their choice in care in dying. For
example if one facility declines to allow a patient their choice in dying,
there is pressure towards other facilities to “follow suit” should the family
wish to move their loved one elsewhere. With medical facilities keeping a
united front, the patient’s wishes are denied. As Dr. Kevorkian said on Fox News (in the video below), “If a
patient consults with a doctor who is opposed to what he wants, then he’s in
the wrong place."
The legal protections that
health care organizations are given, also applies to physicians. Health care
providers have no duty to participate in withdrawal or withholding of certain
health care; duty of provider who is unwilling to participate according to ORS
127.625. (1) No health care provider shall be under any duty, whether by contract, by statute or by any other legal requirement to participate in the withdrawal or withholding of life-sustaining procedures or of artificially administered nutrition or hydration.The healthcare provider,
without abandoning the patient, either discharge the patient or make a
reasonable effort to locate a different health care provider and authorize the
transfer of the patient to that provider [Formerly 97.070; 1993 c.767 §20]. As Dr. Jack Kevorkian said, “You have a right to refuse to participate in anything that
assaults your body or your conscience." As a doctor, he saw patients suffering, and felt that his duty to
help and follow his conscience was above the law. He discusses Einstein’s
quote, “Conscience supercedes the law” and Hippocrates’ saying, “’You do what
is best for the patient.’ and the patient knows what’s best for the patient in
most cases.” Yet, even Dr. Kevorkian used more stringent safeguards than the
present Death with Dignity law before assisting patients with end-of-life
wishes. Instead of two patient consultations, he would conduct anywhere from 6
to 8 interviews making sure the patient was rational. Sometimes the interviews
were held with family and or psychologists present.
Fear tactics by both the media and politicians have put a negative
spin on end-of-life choice. Calling “Death with Dignity” suicide or calling
end-of-life consultation a “Death Panel” stigmatizes the national dialogue and
intimidates family and friends of individuals who’ve opted to use the Death
with Dignity law from open discussion. Additionally, hospices even have their
own points of view imposed upon their patients and volunteers. When we attended
hospice training, we were told that hospice’s stance was that you were not
allowed to be in the room with a patient who has opted to use the “Death with
Dignity” law during the time they are taking the final medication. The
volunteer’s role in comfort care is to make the patient comfortable as well as
provide compassion, presence and companionship. However, if one of our patients
were to use the law, we were unable to support their decision by being present
with them. We were actually told to either leave the patient’s home or wait
outside. We believe this is intended to dissuade the patient’s confidence in
using the law. Therefore, although we believe in the natural right to our
choice in end-of-life, to die without suffering, there’s much work left to be
done to improve and address the needs of the dying in providing the best care
possible.
What do you think the future holds for end-of-life freedom? Will
we look back on this time, in decades to come, and see this as a dark period in
this nation’s history (akin to the pre-Civil Rights Movement era)?
Join us today at - http://tweetchat.com/room/dwdchat
March 29th, at 3pm when we guest host Death with Dignity's TweetChat for a discussion on Advanced Directives.
Discussion topics -
1. What are some of your experiences with advanced directives?
2. How do you support families conflicted when there are disagreements based upon culture, moral beliefs, or superstition?
3. How do you support families making decisions for loved ones when there is not an advanced directive in place?
4. What are the things advanced directives do right? What could they do better?
5. How will advanced directives change in the future? How will they become more approachable?
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
This article focuses on bereavement leave policies and legal provisions. I chose to focus on this topic, after learning from a friend and former co-worker, that the Clark Regional Wastewater District in Vancouver, WA, recently closed down their office for the memorial service of one of their employees, Chris Hodnefield. His healthy lifestyle and fitness habits were well known and his death came as a shock to all.
Bereavement Leave – Not Guaranteed, Not Universal
Firstly, in researching bereavement leave, employers are not required to pay for this type of leave by the federal government and most states. I decided to focus my research on the west coast states of Washington, Oregon and California.
• Washington State - “An employer is not required to give workers paid…bereavement leave.”
• Oregon State – “Bereavement leave is not covered by or required under state or federal family leave laws. Like other benefits, bereavement leave is dependent on the employer´s policy.”
• California State – “Neither federal nor state laws currently provide protected leave for bereavement.”
Employer Bereavement Policies
Since the laws do not require bereavement leave, employers are left to decide whether to offer bereavement leave to their employees or not. Although the most common time period of leave employers offer is 3 days, the policies vary from 1 to 5 days. Some employers determine the leave for bereavement based on the relationship of the individual to the decedent.
A Look at 6 Oregon Employers Bereavement Leave Policies
Private Educational Institution Lewis & Clark College
• 5 Days for the death of a Spouse, Same Sex Domestic Partner (SSDP), Child, Stepchild, Parent, or Sibling.
• 4 Days for the death of Stepparent of self/spouse/SSDP, Grandchild of self/spouse/SSDP, Grandparent of self/spouse/SSDP, Son-in-law or Daughter-in-law of self/spouse/SSDP, Child of Spouse/SSDP, Stepchild of Spouse/SSDP, Parent of Spouse/SSDP, Sibling of Spouse/SSDP
• 1 Day for the death of “Any relative not specifically mentioned in this policy.”
Global Technology Corporation Intel
• “Intel offers leave programs to eligible employees in the event they are unable to work due to …personal situations.”
Global Multinational Retailer Corporation Walmart
• Paid time-off including: …bereavement
Public Institution Fundraising Organization Oregon Lottery
• 1 Day Paid – “Full-time employees may request up to 24 hours of paid bereavement leave for the death of a family member.”
Public Educational Institution Oregon State University
• Up to 3 Days - “Classified employees are eligible for a maximum of three (3) days paid bereavement leave per instance arising from a death in the immediate family of the employee or the employee’s spouse or domestic partner.”
Multinational Snack and Beverage Manufacturing Corporation Pepsi Co.
• No mention of bereavement leave, only a reference to “Family Leave”.
In researching bereavement leave, it was interesting how difficult it was to find out which companies offered bereavement or funeral leave for their employees. Walmart offered superior benefits with paid bereavement leave. Other companies didn’t fare so well (Intel and Pepsi Co.). Also intriguing was the overall random quantity of the leave with employees being offered 1 to 5 days paid depending on the company and the nature of the relationship of the employee to the decedent.
Pet Bereavement Leave
I was surprised to discover bereavement leave extended to include family pets by the SPCA of San Francisco. According to the Wall Street Journal, “Several U.K. and Canadian companies, including the Bank of Scotland, also offer time off…for pet bereavement.” Considering that I have seen co-workers crippled by the loss of a beloved cat or dog, clearly unable to perform their duties I hope this leave becomes more prevalent. Hopefully more workplaces will consider changing their policies in the future.
Bereavement Leave Discussion
Join us on March 8, when we guest host Death with Dignity's TweetChat for a discussion on Bereavement Leave policies and attitudes. http://www.deathwithdignity.org/TweetChats/
Get Ready - TweetChat Discussion Questions
1) As an end-of-life professional, do you feel supported by your employer’s bereavement policies?
Please share your experiences with Bereavement Leave policies.
2) How many days do you feel employers should give employees off?
Should relationship closeness dictate time off?
How do we keep people from abusing the time off?
How do we institute polices that support grief while avoiding abuses of time off?
3) What are the cultural and sociological attitudes towards contemporary bereavement leave? What do you foresee as the future for bereavement leave?
Hope to see you on March 8th for the Death with with Dignity TweetChat.
Reference Links
Washington State Department of Labor and Industries - http://www.lni.wa.gov/WorkplaceRights/LeaveBenefits/VacaySick/
Oregon State - Technical Assistance for Employers –
http://www.oregon.gov/BOLI/TA/T_FAQ_Tabenefits.shtml
California State – Assembly Bill Analysis to Extend Bereavement Leave –
http://www.leginfo.ca.gov/pub/11-12/bill/asm/ab_0301-0350/ab_325_cfa_20110817_142207_sen_floor.html
Lewis and Clark Bereavement Leave Policy –
http://www.lclark.edu/offices/human_resources/employee_resources/policies/benefits/leaves_of_absence/bereavement_leave/
Jobs and Intel – USA – Compensation and Benefits
http://www.intel.com/jobs/usa/bencomp/benefits.htm
We received a question recently about whether or not industry professionals should be working from cultural sensitivity charts. The question was: Would it be harmful if we worked directly from the charts?
Yes, it would be harmful to simply work from the charts because every individual is unique and holds a unique set of values that may or may not be reflected in the chart. I believe it best to ask each family, culture or patient that we meet, what his or her specific needs are for caregiving. We should always ask how we could best serve them in the most dignified and respectful way possible.
One major flaw with the charts is that they do not highlight variances and differences that exist within the culture or religion. For instance, I’ve known some Mormons who will not take caffeine in any form, others that will drink caffeinated soda but not coffee or tea, some that will accept only caffeine that is already present in foods (like chocolate), and others that drink coffee. So if the chart were to generally say, ‘caffeine not okay’ for that religion, that would be only slightly accurate and would not fit all of the variations listed above.
Just last year, the cremation of Jewish singer Amy Winehouse fueled many discussions, news articles and blog posts about the changing Jewish values. On CNN, one blog post was titled “Winehouse burial raises Jewish questions about tattoos, cremation”. On E! Online, their news article asked “Did Amy Winehouse's Funeral Violate Jewish Law?” Where Orthodox Jews practice only earth burial within 24 hours in a wooden casket with no metal fixtures, some reform Jews allow cremation. Therefore, we can never rely upon one simple answer to each culture or religion.
Basically, the cultural sensitivity charts are best used as a guideline to understanding what some people within that specific culture or religion adhere to. It is by no means an absolute guide to understanding all the people that affiliate with that culture or religion.
In Making Rounds with Oscar, geriatrician Dr. David Dosa focuses on the nuances of Alzheimer’s disease and dementia. Of Dr. Dosa's patient stories, I found most intriguing the story of a woman with dementia named Ruth Rubenstein and her doting husband, Frank Rubenstein. I have focused on the details of their relationship as chronicled by Dr. Dosa, as it clearly illustrates how dementia affects relationships from diagnosis through decline.
Diagnosis “I had to look into the eyes of the eighty-year-old woman I had just examined and ruin her life.” Dr. Dosa is examining Mrs. Rubenstein to determine if she has dementia. Couples like Ruth Rubenstein and her husband Frank have a symbiotic relationship whereby one can deflect the questions to the other. So when asked about her favorite restaurant, Ruth does just this – she has her husband answer the question. Dr. Dosa is not deterred by this attempt at covering up her memory loss, and moves on to asking her next to draw a clock from memory. Ruth does this after some coaxing. However, when asked to place the hands at 2:45, she puts the little hand at the two and the minute hand half way between the 4 and the 5.
Next Dr. Dosa asks her how many four legged animals she can list in one minute. Ruth lists only 6 and cat was listed twice. When asked to spell the word ‘world,’ Ruth is able to do so quickly and accurately but she cannot spell it backwards, and gets only two of the letters in place when she tries.
Privately, Dr. Dosa asks her husband more specific questions including if she has done anything dangerous in her everyday living, like leaving the bath running, leaving the stove on, having car accidents or fender benders, or if any other changes in her behavior have occurred. This particular section reminded me of a good friend whose mother had consistently been hitting the curbs and sometimes parked cars at her assisted living facility. My friend had the hardest time convincing her mother to give up driving. Independence is hard to part with, but the dangerous facts spoke for themselves. My friend finally scheduled a meeting with her mother’s doctor, so together she and the doctor could address her health issues in relation to her ability to drive.
Aging and Memory During Dr. Dosa’s examination of Ruth she tries to insists her memory loss is simply because she is old, but memory does not decline due to simple aging. Here, Dr. Dosa touches on the fact that “age really has nothing to do with memory, and problems with memory are never normal aging.” In fact, many problems like arthritis, high blood pressure, high cholesterol, adult-onset diabetes, and some cancers are contributed with aging, simply because they usually occur in people’s senior or elder years. Interestingly, these are not strict aging related health issues, but rather the effects of years of build-up in the body, allowing the problems to surface in later life. For instance, if one has smoked for 50 years of their life, it makes sense that the damage would in time catch up producing perhaps emphysema or lung cancer in one’s 60’s or 70’s. In fact, my grandmother who began smoking at age 16 did not get emphysema until she was in her early to mid 70’s.
Decline Begins Dr. Dosa chronicles the decline of Ruth’s mental health via dementia. First Ruth’s memory impairs her social graces and embarrassed by her memory loss, she withdraws from her friends. The withdrawal causes a depression, which is then treated by medication. Next Ruth becomes unable to complete household chores, meals are frequently burnt, simple recipes become too difficult to manage, and her husband Frank must resort to hiring a maid and ordering meals out.
Romance Flourishes What is interesting is that despite this decline, the Rubenstein’s relationship remains loving and dementia even spices up their love life. Dr. Dosa said, “One day…Frank pulled me aside…like a young teen sheepishly buying condoms for the first time, he asked me if I had any samples for something that might help his impotence." Frank was having trouble meeting his wife’s sexual demands, which Dr. Dosa explains is not unusual for married couples when one has dementia.
Caregiving Becomes Too Difficult However, as Ruth’s mental decline gets worse, it becomes apparent to Dr. Dosa that Frank can no longer care for her. Frank appears unwashed, disheveled and exhausted. Although Frank takes offense at Dr. Dosa’s suggestion that he put his wife in a skilled nursing facility, he takes the suggestion to heart and hires an in-home caregiver.
Health Declines Not long after, Ruth contracts pneumonia and is hospitalized. Her memory impairment makes the hospital stay difficult. She wanders about in the middle of the night, gets “tangled in her IV tubing” and falls “awkwardly to the floor.” The fall leaves her with a broken hip requiring surgery. The surgery leaves Ruth with more health issues. She “suffered a pulmonary embolus and became less stable.” When her breathing becomes difficult, they intubate her. Her health does eventually improve but it leaves her too weak to walk and her husband Frank must consent to place her in the skilled nursing facility.
Appetite Declines In the skilled nursing facility, Ruth stops eating and loses 10 pounds. Her husband insists that she is seen by a gastroenterologist, and refuses to consider hospice. She again contracts pneumonia and returns to the hospital. During this stay she is given strong medications to calm her. Eventually a one-to-one aide is then assigned to keep her from getting up from the bed and falling during the night.
She returns from the hospital, but is too confused to eat and refuses to do so. Intravenous fluids are required to sustain her. She experiences a confused delirium and agitation from hospitalization and refuses to eat. Her husband Frank insists that she must eat, and requests a feeding tube. However, Dr. Dosa kindly reminds him “When your wife was still able to speak her mind she told me she didn’t want a feeding tube to help her with her nutrition. Shouldn’t we honor her wishes?” Frank agrees with Dr. Dosa to honor his wife’s wishes, but begins to cry saying, “Doctor, I’m not ready for her to go.”.
Misconceptions About Feeding Tubes Here, Dr. Dosa explains the misconceptions with feeding tubes and how they are the point of contention with most families. Most people believe that the feeding tubes prolong life, but Dr. Dosa points out that there is “no place for feeding tubes in terminal dementia. Objectively they have never been shown to increase a person’s length of life or reduce the number of episodes of pneumonia. Feeding tubes are not without their side effects.” Although people believe that not feeding a patient is “cruel and unusual punishment”, Dr. Dosa points out that “loss of weight at the end of life is a natural by product of the body shutting down as it prepares itself for death. People at this stage do not perceive hunger or thirst the way someone who is healthy” does.
Health, Love & Appetite Appear to Return Some days later, Ruth’s delirium improves and she starts eating again. She and Frank are seen walking down the hallway holding hands. When their anniversary date comes up, Frank asks for privacy so he can be alone with Ruth. Dr. Dosa notes that “requests for privacy between patients and spouses are not uncommon…they’re a married couple. Just because she lives here doesn’t mean that they don’t have needs.” Interestingly, what Dr. Dosa finds out from the head nurse is that another male patient has been spending a great deal of time in Ruth’s room and that Ruth likes his attention.
Spouse Forgotten Within a few minutes of husband Frank’s arrival, Ruth screams and rushes out of her room. “The look on her face was one of pure terror and she ran past us without stopping.” Her husband Frank calls Dr. Dosa into the room and explains their relationship and what just occurred.
Frank and Ruth had met at a concentration camp in 1943. They spent nine months together until they were sent away to different camps. Before the separation they agreed that if they survived, they would look for each other to meet at a church courtyard in Frank’s hometown. That date they met up was 63 years ago that day; this was the anniversary Frank had come to celebrate, but instead of a celebration he was met with a shock. “’For the first time since that day, Ruth does not know who I am.’” When he bent to kiss her forehead, he said “’in her eyes all I could see was terror…I was a stranger to her. She just started screaming…I put my hand up to comfort her and she slapped me in the face. Then she got up and ran out of the room.”
Existential Death Frank then said, “Doctor, in my mind my wife died today…please just make whatever is left of her [life] comfortable and don’t let her suffer anymore.”
Somatic Death Frank never returned to the nursing facility after this day, and within a few weeks, he died of a heart attack. Ruth outlived him by just a couple of months, and without any children, “her lawyer was the closest thing she had to next of kin.”
Although Dr. Dosa’s chronicle of the Rubenstein’s relationship is not met with a happy ending, it is an honest portrayal of how dementia takes its toll on patients and their families.
Dosa, D. (2010) Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat. New York: Hyperion
Dignity in Dying advocate, Dr. Jack Kevorkian, has died at age 83. Dr. Kevorkian fought for American freedom and rights at end-of-life. Although his 2008 congressional run in Michigan did not amount in a win, he did receive nearly 9,000 votes. Aside from his end-of-life rights activism, he was also a painter and jazz musician.
