Portland Adventist Medical Center Grief Classes/Support Meetings
10123 S.E. Market St. Portland, Oregon 97216
503-251-6105
Providence St. Vincent Hospital Medical Ctr.
10 to 11:30 a.m., first and third Tuesdays, Pastoral Care Conference Room
7 to 8:30 p.m., second and fourth Tuesdays, Conference Room 3
9205 S.W. Barnes Rd., Portland, Oregon 97225
503-291-2261
Tuality Community Hospital
Surviving the Loss
335 S.E. 8th, Hillsboro, Oregon 97123
503-681-1700
Health & Lifestyle Center
1885 NW 185th Ave, Aloha, OR 97006
503-215-6595
SW Washington Medical Center
Grief and Bereavement Support Group
P.O. Box 1600
Vancouver, Washington 98668
Providence Portland Medical Center
11 a.m. to 12:30 p.m., first and third Tuesdays, Pastoral Care Conference Room
4:30 to 6 p.m., second and fourth Tuesdays, Pastoral Care Conference Room
4805 NE Glisan St., Portland, OR 97213
503-215-1111
Providence Willamette Falls Medical Center
1:30 to 3 p.m., second and fourth Tuesdays, Providence Willamette Falls Community Center
1500 Division St., Oregon City, OR 97045
503-656-1631
Children's Grief and Bereavement Care
Legacy Hospice
2275 NE McDaniel Lane McMinnville, OR 97128
503-220-1000
Camp Erin - Grief Support for Kids
6410 NE Halsey St., Suite 300 Portland, OR 97213
503-215-2273
Me, Too. and Company Children's Grief Support Group
P. O. Box 10796, Portland, OR 97296
503-228-2104
Physician Aid in Dying - Resources and Information
If you know of or offer other resources you feel would be helpful for folks, please let us know so we can add them to this page. We thank you for your input.
My friend’s 86-year-old grandfather recently entered hospice after suffering a debilitating stroke that left half his body paralyzed. She’s making the best of what little time they have left, visiting him frequently without her children. When I asked why, she said she was concerned the kids would be afraid of him and how he looks now with the paralysis. Looking back at my stepfather’s graveside service last year, I was disappointed when the parents of two children (ages 8 and 10) decided against bringing their son and daughter to the cemetery because they thought it would be too much for them. Their children were very close to my stepfather, and I feel they should have been allowed to come to this service because it was a beautiful, family friendly service. The service we held was held outdoors in the cemetery on a lovely sunny day with a horse drawn carriage. As a bagpiper led the carriage with a melody, everyone walked behind and followed the carriage to the burial site. The casket was closed the entire time and we had everyone place a flower on the casket before it was lowered. There couldn't have been a more perfect opportunity to address the subject of death with a child than this service. Children understand death differently at different ages as shown below:
Age of Child
Comprehension of Death
0 to 3 years
No comprehension of death.
3 to 5 years
Unable to understand finality of death.
5 - 9 years
Begins to understand death is final, but not always that it is inevitable for everyone.
9 years & up
Understands death is final and inevitable for everyone.
Be completely honest. When explaining death, speak in tangible terms instead of philosophical ones. Give your children permission to cry and to express their feelings. If you do not know the answer to a question they ask, be honest about that too.
Children need stability and therefore, families should not make up stories or fairy-tales about death. Never share with a child something you do not believe yourself or something they will have to discard later. We should also never tell them their loved one is in heaven, that death is like sleep, or that death happened because the person was sick. This last part in particular can scare children into fearing death from any illness, which is why it is not recommended. Every parent has the right to decide when it is appropriate to expose their child/children to death. As a funeral director, I’m hoping parents will keep an open mind, and realize there are beautiful ceremonies that need not be frightening to their children but may help to expose them in a more gentle way. Do you remember your own first experience with death or the first time you had to explain death to your child? Was there anything you found that was comforting to you or your child?
“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)?
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
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