This post is similar to what happened to me under the Vancouver Health Authority. I learned one thing from this post that the proxy should always be with the patient when DNRs are discussed. From web site True Dignity Vermont.
The Horrifying Medical Culture into Which the Vermont Legislature Has
Injected Assisted Suicide
March 12, 2015 by
Administrators
Over its years of fighting assisted
suicide, True Dignity has become acutely aware that medical care of people with
disabilities is fraught with discrimination: there is a dangerous assumption,
on the part of able- bodied people with power, that certain types of life are
not worth living and should be brought to a quick end. Bill Peace’s
article about his hospital experience (available on request by emailing
admin@truedignityvt.org
and also at a link posted March 10, 2015 on our Facebook page) and Lynne
Vitzthum’s recent testimony about her pediatrician’s urging her to decline
treatment for her disabled son are examples of discriminatory, arrogant and
coercive medical attitudes and practices. Peace and Vitzthum describe a
medical and society-wide culture into which it is obviously deadly to introduce
assisted suicide.
True Dignity has received yet another compelling personal account of this
dangerous and coercive medical culture and the devastation it wreaked on the
lives of VT patients and their families even before assisted suicide became
legal. One has to set reason aside to ignore the reality that the very
same powerful people who act coercively with regard to what their
prejudice causes them to define as “overtreatment” of people with disability,
the old, and those thought to be terminally ill, will act coercively with
regard to assisted suicide.
The events described in this story took place at a hospital and rehab/nursing
Home in Vermont. As much as we can without revealing identifying
information, we will let the person involved, who was the designated surrogate
for her partner, tell the story in her own words, which are italicized and
indented. For the partner’s protection, and ours, we are calling the
patient, “John Doe”. We have not changed the partner’s capitalization and
boldface of words and phrases she wants to emphasize.
For several weeks I was there
(in the hospital) as the legal Health Care Proxy and Life Partner of (Mr. John
Doe), aged 79. He was to have outpatient Cancer treatment which turned
into hospital care.
…early in treatment the
Oncologist appointed to Mr. Doe started him on chemotherapy and diuretics for
swollen ankles of unknown cause… There was no warning that chemotherapy by
itself could cause infections.
(Mr. Doe) was admitted to the
Hospital with a Pneumonia type lung infection which got steadily worse each
day. The Oncologist did not see (Mr. Doe) during this crucial time.
Out of a large team of changing Doctors and Residents we mostly saw one
Resident that week who basically said nothing could be done for the infection…
When asked what could be done for his pain the Resident glibly replied,”Research
has shown that Marijuana is good for pain.” Useless
information at the time.
Shortly after (Mr. Doe) was
transferred to the Intensive Care Unit. The Oncologist, knowing that I was the
Health Proxy, went behind my back trying to pressure my Partner
into signing a “Do Not Resuscitate” form. My partner
was distressed when he told me the Doctor and a Resident had approached him
with a form he did not want. He wanted to live!
On (the next day) I walked in
on the determined Oncologist with a Resident again, for the second time, trying
to pressure (Mr. Doe) into signing a DNR. I showed my legal papers that
day. The doctor used Residents supposedly as Witnesses for the
Patient.
Doctors should not be
allowed to pressure or intimidate Patients into choosing death without the
presence of the Patient’s family or designated Proxy…
On (the same day) late
afternoon two young people either Doctors or Residents said my Partner would
need Ventilator Life Support for his critical lung infection. They
strongly advised against the ventilator saying, “Most people wouldn’t choose
that. He only has a 50-50 chance of survival.” To me letting the Love of
My Life die with a good 50-50 chance at life would be MURDER. I chose the
ventilator against their ‘Whatever’ attitude of disdain.
On (the next day) an especially
nasty light haired Nurse, who had angrily confronted my Ventilator decision the
day before, barked when I asked his condition. “He’s
only alive because WE’RE keeping him alive, His numbers are good because WE’RE
making them good!” Yikes, I had the stupid idea that Hospitals are supposed
to save lives. Yes, there may come a time for the patient and family to
decline treatment but not by being bullied to death.
(Two days later) after
a Pulmonary Doctor told me the Patient was showing improvement the Oncologist
showed up with the usual foreboding of doom, got within inches of my face and
arrogantly berated me with eyes blazing, “I’ve had patients
come off the ventilator and tell their families “DON’T YOU EVER DO THAT TO ME
AGAIN!” A nasty unprofessional encounter. I had to inform the hostile
Doctor that I knew of John Doe’s wishes FORTY YEARS LONGER than his five minute
visit.
(The next day) a patronizing
brunette Nurse gave me a speech on how “Nurses are patient
advocates” as though I were his enemy. She mouthed a
righteous pitch on “Death with Dignity” then
proclaimed, “(Mr. Doe) feels that he has lost his right of
choice.” With his eyes closed and a Ventilator tube down
his throat (Mr. Doe) couldn’t speak but she wisely knew of his wish to die.
In fact my decision was right
and the GODS were wrong. The week after Life Support (Mr. Doe) was
feeling, eating and looking well. Not one Death Advocate had a
glad word to say about his recovery. He was released to a
rehab center to rebuild strength for further cancer treatment. He was discharged
to the rehab on high doses of prescribed blood thinners with no hospital
oversight.
Three days later the patient
was sent from the rehab facility in pain from exercise back to the same
hospital’s emergency room where internal hemorrhaging due to blood thinners was
misdiagnosed as sciatica back pain. He was released back to the rehab. He
continued to be in severe pain but the rehab doctor on call would not come over
the weekend. He sent his Nurse on Monday. She sent (Mr. Doe) back to the
hospital in near death condition. It had taken much begging before the
Rehab even called the doctor.
It turns out that the doctor on
call had no legal obligation to see the patient. By the time (Mr. Doe} was finally
readmitted to the hospital and the hemorrhaging diagnosed and treated, it was
too late. After blood transfusions he did not recover well enough for
further cancer treatment and was sent home to die.
The hospital later admitted the
misdiagnosis, in writing, but claimed it was due to the patient’s atypical
symptoms. The hospital was still cited by the State Division of Licensing
because a Physician Assistant, PA, made the incorrect diagnosis of sciatica
without consulting a Doctor. Here is more from the Patient’s Partner:
(Little more than a week later)
upon leaving (the hospital) to go back to our town to die I got my last
scolding from one of the last team Doctors saying more than once, “You’re
the ONE who’s keeping him Alive, we often have this PROBLEM with
Couples.” Love is now a problem.
…Never before had I imagined
being in a Hospital that wants the Patient to DIE. From this awful
experience I believe that with legal ASSISTED SUICIDE those
patients who want to die will be outnumbered by those Elderly who are forced to
die. DEATH IS GUARANTEED TO ALL without Assistance. In my view it is more
important to protect the RIGHT TO LIVE than the Right to Die.
(Mr. Doe) remained in constant
pain with no use of his legs since the two days of misdiagnosed,
untreated hemorrhaging. He died 11 days after leaving the hospital. This
happened in 2010.
Whatever you think about aggressive
care at the end of life, surely doctors should not be prejudiced enough to
try to destroy the autonomy of a patient who, during some of these events, was
able to communicate his dismay at being pressured. Surely he should have
never been pressured in the absence of his life partner and proxy, especially
by two doctors, one of whom was dependent on her superior and scarcely could be
expected to countermand him.
Shockingly, such behavior is not actually illegal in Vermont. In fact,
the physician did not even have to consult the patient or proxy. All he
was legally required to do was recruit another clinician (the resident?!)
to join with him in defining resuscitation as futile care by issuing “a
certification…that resuscitation would not prevent the imminent death of the
patient, should the patient experience cardiac arrest (
http://healthvermont.gov/regs/ad/dnr_colst_instructions.pdf).
This man lived six weeks more after a Pneumonia type infection so using
“imminent” to describe his death does not seem to be justified. This
doctor clearly had a point of view that he was determined to impose, and he did
not conceal his anger when someone bucked his authority.
The only thing that kept this patient alive after Pneumonia was the strength of
will of his partner, who did not care what people in the hospital thought about
her, even as, she writes, “Between the Death Advocates at the Hospital and the
indifference at the Rehab Center, I DID START TO QUESTION MY OWN AND
ALL SANITY.” When everyone else is for death, it’s hard to stand
firm on a choice for life, but she did it, admirably.
The real agenda of the promoters of assisted suicide has nothing to do with the
“choice” which their promotional ads tell us must be honored at all
costs. It is about getting rid of people who need care that is costly and
time consuming. “At all costs” is an apt phrase, because patients, who,
as this story shows, are already paying the costs that hospitals and the states
are cutting everywhere, will lose more and more of their liberties if assisted
suicide becomes an ordinary part of end of life care in Vermont.
9 comments:
Ann
I am real sorry to read about this dying of Kate Kelly's mother; I am NOT saying this is a clear case pro euthanasia. I am saying Kelly's mother has been given very bad, insufficient palliative care, where the caregivers used morphine in the wrong way (calculating on the double effect??), causing side effects which resulted in this unwanted outcome: a terrible death!
I am not a fervent supporter of VSED, certainly not in all cases. The person must to begin with have the serious wish him/herself knowing the consequences; (s)he must be nearly moribound, barely be eating and drinking already, before starting the process of VSED at all. And... most important: good professional and competent guidance with optimal palliative care should have been arranged and available day and night.
It is a pity that Alex is using this story as a proof for the dangerous developments in the end-of-life decisions (a n=1 study) and not as a signal that Palliative Care failed in this case and thus that also providers of Palliative Care need education and transparancy.
I know cases (more then one for that) of VSED with late Alzheimer's where the patient received professional Palliative Care with VSED and died quietly and humanely; in a country where through (or at least since) legalisation of euthanasia, Palliative Care has been developed to a very high ranking (both in availablity and in quality) in the world, and where thus all end-of-life decisions (from "let nature take its role" via "palliative care/sedation" to "euthanasia or physician assisted suicide") are mostly seen as an issue to be talked about when appropriate.
Rob reduces the pain of Kate's mothers death to poor palliative care. He is only partly right.
The fact is that to kill someone, who is not otherwise dying by dehydration is euthanasia, does cause an horrific death and should be referred to as elder abuse.
To say that - if we only used the proper amount of morphine everything would be fine - negates the fact that this is not a good death because it requires large amounts of morphine to mask the pain.
This is totally different in a situation where someone is dying and is nearing death, whether it be through cancer or other causes that has led to organ failure.
In those circumstances the body is naturally shutting down and the body has stopped requiring or being able to circulate or absorb the hydration. In this circumstance the natural process of death requires, at some point, that fluids be withdrawn in order to prevent suffering.
Kate Kelly's mother had a mild stroke, she was not otherwise dying, she was not experiencing organ failure, but rather a decision was made, by others, that her life was not worth living.
This also occurs in the Netherlands.
It is with tears and heartache that I read your story. I am so sad and sorry that your mother and you were treated so horribly in the hospital. You see your story is so similar in so many ways to that of our dear dad and our family. I tell our story to anyone who will listen and most times others relate their own eerily similar and tragic story of a loved one. We knew what had happened to our dad and our family was not a unique story, but I had no idea just how often this is happening. So many tragic accounts that I have even considered documenting them.
There is something so corrupt happening and the corruption is resulting in unnecessary death.
My father was labelled with Alzheimers. Although, upon more detailed research, after the fact, we believe he was inaccurately labelled. He had some cognitive impairment. With much time and effort from our family (tireless efforts from my brother) he was actually able to re learn many things. And just months before he had the misfortune of ending up in the hospital he sat in the living room with us and stated “I am just happy to be sitting here with my family”. He was a happy and positive man and loved to connect with people. Quality of life for sure. Quality of life that was stolen from him and our family. He trusted us to take care of him the best we could and we did. But we were not prepared for the onslaught at the hospital and seemed powerless to help him there.
My dad’s story in the hospital is quite lengthy and involved so will not go into detail here.
We firmly believe that they withheld the proper medical care because of his Alzheimer label. That was confirmed to us even more so, once we obtained a copy of his medical file from the hospital. The medical file consisting of pages of notes from doctors and nurses -, purposeful and prejudicial entries with no foundation in truth and also purposeful omissions. Much time spent making notes. Much time… He was denied medical care because of his disability - and as such it would appear he was denied his basic human rights – at least his human rights as they are described in Canada. It is most unlikely that the majority of Alzheimer patients who end up in the hospital for another health issue actually die of Alzheimer’s. And yet it is most likely listed as the cause of death on the death certificate.
There appears to be a serious human rights violation occurring as it relates to disabled Canadians – whether Alzheimer or any other disability. I am not aware of any legislation that allows the removal of those human rights when one enters the hospital.
Kate -Please continue to tell your story about your mom and we will continue to tell ours about our dad. And if we can help even one family from torturous treatment in the hospital and help their loved one to return to their home and be cared for by those who know them best and love them, then we have succeeded – in memory and to the honour of all of those who didn’t make it home.