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My mother experienced days of unmanaged, intense pain (screaming in pain when she was conscious during the time I was with her) without notification to her doctor or family. No reason for this has ever been provided.
My response to the Protection of Persons in Care preliminary investigation into my mother's neglect is copied below. It outlines what happened to my mother as I experienced it. I haven't included the attachments today such as photographs, screen shots of messaging with friends, emails, etc. I may do so in the future and I'm happy to share any information that could help others.
I knew my mother very well. If her experience could help others she would want me to do that. I provide a little more information about my 'why' in the sidebar.
This isn't easy reading but a real life example will help in understanding the failures and challenges in the systems that should have protected my mother, Margaret Macomber.
I've removed identifying information regarding the facility. It will be available in the future.
Draft Response to Protection of Persons in Care
Preliminary Investigation Report, File # XXX -2023-10
From Carol Macomber, daughter, Substitute Decision Maker
(SDM) for Margaret Macomber
There should be a response to
the Preliminary Investigation Report from Colchester East Hants Hospital as
well, as they also made a complaint. The person making the complaint on behalf
of the hospital is the Manager of Patient Safety. I will check in with him as
well. I was told that the hospital complaint and mine were being combined, not
that theirs was no longer included.
Note – I was wrong about the above statement in red bold.
The hospital did make a complaint but they aren’t invited to respond to the
investigation.
Table of Contents
1.
Context and potential witnesses to context, page
2
2.
Timeline including points of confusion in the
Preliminary Report, pages 2 - 4
3.
My experience on September 18 and potential
witnesses, pages 4, 5
4.
Discrepancies in XXX Reporting, pages 5, 6
5.
Additional Information needing inclusion, pages
6 - 8
6.
Attachments
·
A, B – screenshots of messaging with friends
during the incident and the following days, sent separately
·
C - photographs of Mrs. Macomber’s legs and bed
rails, page 9
·
D - Pathway of Care form, sent separately
1.
1.
Context:
Mrs. Macomber was in the Colchester
hospital in the summer of 2023 convalescing from a broken pelvis. Prior to that
she’d lived with me, Carol Macomber, SDM, since her mid eighties. She moved to XXX Long Term Care on
September 1, 2023.
Mrs. Macomber was comfortable and coherent
when I (SDM Carol Macomber) visited her on September 15, 2023, as she had been
since moving to XXX
at the beginning of September. There was no history of screaming, confusion, or
asking for help, ever. She read, recognized and conversed with family and
friends and maintained a positive demeanor adjusting to this new living
situation. Her only pain was arthritic, treated with regularly scheduled
acetaminophen. She did not complain about pain.
When I arrived at XXX on September 18, 2023 this had changed
dramatically. She was screaming in pain and had lost her ability for all but
very limited communication. Details are provided below.
Potential witnesses to
Mrs. Macomber’s mental ability (I will get contact information where possible,
once I know who’s needed):
· Noel
United Church minister
· Colchester
Hospital Staff who arranged for Mrs. Macomber to move to XXX – they insisted that
since Mrs. Macomber was mentally sound that she sign her own documents for the
move. She was a full participant in the decision to move there, weighing pros
and cons with me.
· Nursing
staff from her summer stay in hospital.
· Friends
who visited her prior to going to hospital or at the hospital.
· Homecare
providers who helped her before going to hospital or visited her once in
hospital.
2.
Timeline (all dates are 2023) and Points of
Confusion In The Preliminary Report
a)
August 11 - Mrs. Macomber, a patient at
Colchester Hospital, reviewed and signed documents for her move to XXX. (This is the date I
have in my calendar but it’s possible it got moved around to a day close to
this time.)
b)
September 1 – Mrs. Macomber moved to XXX Long Term Care.
c)
September 13 – XXX, XXX Site Manager, emails residents and family members that XXX is well prepared for
the coming hurricane, Lee.
d)
September 15, afternoon – I visited Mrs.
Macomber at XXX. We
chatted and listened to an audio book (Spare, Prince Harry). She ate
blueberries I brought her. I explained to her that I wouldn’t get back until
Monday as we were getting a hurricane over the weekend.
Please note that the Preliminary
Investigation Report is confusing in some areas, as noted in red italics.
e)
September 15
– This date is confusing. The report states
that Mrs. Macomber began shouting for help and moaning on September 16 but it
also states that a note from September 16 documents that Mrs. Macomber had been
shouting for help throughout the night, so starting September 15.
Staff notes that Mrs. Macomber began shouting for help, moaning and can’t
stay still on the bed. They note they “ensured safety, endorsed”. I don’t know
how they ensured safety or what endorsed means in this situation. Although this
staff person noted that Mrs. Macomber was in pain all night and that this was abnormal for her, this staff person isn’t
given an identifier in the preliminary report, as subsequent staff are.
I’ll refer to her as Pre-Staff 1.
The pain wasn’t treated. The doctor wasn’t notified. The SDM wasn’t
notified.
f)
September 16 - Staff 1 was told by care staff that Mrs. Macomber’s behavior was
abnormal. It isn’t clear what the report is referring to with Staff 1 and care
staff – what is their role and what are they responsible for? Can we please have the job titles and responsibilities?
What is the abnormal behavior they’re
referring to? They state that poor appetite, which did warrant notes, wasn’t
abnormal but the abnormal behavior isn’t defined or even touched on. This
doesn’t further the aims of the report.
Point #4 in the Preliminary Report states
that Mrs. Macomber’s undefined abnormal behavior was treated with sips of
water. It isn’t made clear if it is Staff 1 or the previously referenced care
staff or someone else who is treating the on-going abnormal behavior with sips
of water.
Staff 1 indicate they took vitals and
informed a responsibility nurse about the resident’s behavior on the
evening of September 16 but there is no documentation. The report doesn’t state what the behavior was.
The pain wasn’t treated. The doctor wasn’t notified. The SDM wasn’t
notified.
g)
September 17 – Staff 2 reported that they
took Mrs. Macomber’s temperature and that it was normal. This isn’t documented.
Staff 2 reported that Mrs. Macomber said she wasn’t in pain. This isn’t
documented and doesn’t coincide with the next
point. Staff 2 documented that Mrs. Macomber would holler (their choice of
words) if taken to the dining room. Staff 2 wrote detailed notes about Mrs.
Macomber’s eating (noted as not abnormal) but nothing about her pain (noted as
abnormal). Staff 3 notes on September 18 that they were told Mrs. Macomber was
in pain from the night before but there is no documentation or report of this
on September 17.
The pain wasn’t treated. The doctor wasn’t notified. The SDM wasn’t
notified.
h)
September 18, XXX – Staff 3 reported coming onto day
shift and being told in report that Mrs. Macomber was in pain from the night
before. Staff 3 reported that Mrs. Macomber was moaning in pain. Staff reported
that although Mrs. Macomber had been in pain, was screaming and agitated, they
took her to the dining room. No explanation is provided for this action.
The pain wasn’t treated. The doctor wasn’t notified. The SDM wasn’t
notified.
3.
My Experience on September 18 and
Potential Witnesses
I arrived at XXX at 10:30 am and heard Mrs. Macomber screaming
as I came through the doors to her wing. I got to her room and her door was
closed. Rushing to her bedside I grabbed the call button and rang for help,
assuming that staff didn’t know that my mother was in severe distress.
When I asked staff to help Mrs. Macomber they
said that she refused to take her acetaminophen that morning. Nothing else was
offered. Mrs. Macomber’s ‘refusal’ to take her medication was the only
explanation provided for her condition.
I, completely untrained in medicine, could
see she wasn’t capable of taking her medication (she later vomited). I asked
that staff get injectable pain medication and medical attention immediately.
This is documented in messages I sent to friends (Attachments A and B).
Mrs. Macomber’s legs were badly cut when I
arrived, adding to her pain. Staff told me she had cut them on the bed rails
when thrashing in pain. The bed rails were down when I arrived and Mrs.
Macomber was still thrashing. This is documented in photographs, Attachment C,
which also demonstrate her fall risk. Staff told me her bedrails had been
covered in blood from her thrashing and cutting them. Later a nurse at
Colchester hospital told me that Mrs. Macomber’s legs were badly lacerated.
This is documented in messages I sent to friends at the time, Attachments A and
B.
During this time Mrs. Macomber appeared
dehydrated (she displayed extreme thirst when I arrived). She threw up on
herself while spasming in pain after I arrived. Her clothes were stained, possibly from
previous vomiting. She was wearing the same clothes she’d had on Friday when I
arrived on Monday. Hospital emergency records indicate high Na, potentially
from dehydration.
Mrs. Macomber’s pain continued with the
exception of two brief respites until approximately 3:00 pm. Crying and begging
for help for hours, I held my mother in my arms while she screamed. This is documented in messages to friends,
Attachments A and B.
Although she couldn’t swallow medication,
acetaminophen suppositories weren’t offered until hours after I started begging
for help. When the suppository was provided staff noted that Mrs. Macomber had
blood in her rectum.
Injectable pain medication wasn’t provided
until I threatened to post video of Mrs. Macomber screaming and writhing in pain
to social media. EMTs were there within minutes and immediately recognized
that it was an emergency. See ‘Discrepancies’ below for further clarification.
I overheard staff telling an EMT that the
pain had started the night before. This was the first time I knew that it
hadn’t just happened before I arrived that day. This is documented in messages
to friends, Attachments A and B. Upon reading the Preliminary Report I learned
that it had actually started at least two days before, possible three.
Potential Witnesses – EMTs (especially the
one who got doctor approval and administered morphine), Colchester Hospital
Emergency Room staff, hospital social worker, friends I was messaging with
4.
Discrepancy in XXX notes and my experience:
a)
XXX notes that Mrs. Macomber was starting to get restless again
when I arrived at 10:30, Monday, September 18. In fact she was screaming
so loudly I could hear her down the corridor and through her closed door. This
is significantly more than getting restless. I have screen shots of notes I
wrote to a friend about Mrs. Macomber’s condition at the time it happened
(attached, Exhibit A).
b)
XXX notes that Mrs. Macomber refused her 8:00 am, September 18
acetaminophen. They omit that she wasn’t capable of taking it (outlined above).
c)
XXX notes that Mrs. Macomber took her acetaminophen at 10:30 am,
September 18, after the SDM arrived. XXX fails to note that Mrs. Macomber still wasn’t capable of
taking the medication. I, not XXX staff, broke and ground the pill up as best I could and she
got some pieces of the pill with sips of water.
d)
XXX notes that I requested that Mrs. Macomber be transferred to
hospital and then took it back. Later, in point #17 of the Preliminary Report,
staff indicate that I was indecisive about whether I wanted Mrs. Macomber to go
to the hospital. This is a disturbingly false portrayal of events. Honesty and
ethics policy for XXX
and RN’s would be useful here. I unwaveringly requested that my mother receive
help as quickly as possible. Staff told me that they contacted 911 and there
would be hours to wait for an ambulance and for emergency care and that they
anticipated getting injectable pain relief and medical attention more quickly. XXX staff were unhelpful
about a process to achieve relief for Mrs. Macomber’s ordeal, while hours
dragged by. Nothing happened until I said I would post video of Mrs. Macomber
screaming and writhing in pain if something wasn’t done immediately. EMTs
arrived minutes later. This is also documented in my notes to a friend
(Attachment A). I’d note as well that even acetaminophen suppositories weren’t
offered for hours.
It's crucial to note that Mrs. Macomber
was only assisted when I insisted on it. I found her screaming, with her
door shut. I’ve learned this had been happening for two and possibly three days.
5.
Additional Information Requested for
Inclusion in the Report
Because of the seriousness of this issue
and the need to protect other vulnerable XXX residents in the future, this is one of the
most important sections of my feedback. I’ve requested assistance from an RN
and a doctor, both with experience in long term care, with preparing this
feedback.
a)
Please include all information in the report
that could lead to better outcomes for others in the future. For example the
investigator told me she didn’t include the cuts to Mrs. Macomber’s legs in the
report because she was only investigating the pain. Aside from the cuts adding
to the pain, they were caused by thrashing in pain. I was told about this by XXX. It’s noted in my
messages to friends, Attachment A and B and in photographs, Attachment C.
Please clarify why my mother’s bedrails
were down while she was thrashing in pain. If they weren’t safe what measures
should have been used to keep Mrs. Macomber safe? Does XXX use restraints? Did they at any time
use restraints on Mrs. Macomber?
b)
It must be noted in the report that both
Colchester East Hants Hospital and the SDM made a complaint about this incident
to Protection of Persons in Care. I was told that the complaints would be
combined. Please clarify in the report that all complaints were included and
all those making a complaint were encouraged to provide feedback.
c)
All health information noted by Colchester East
Hants hospital that relates to Mrs. Macomber’s lack of care at XXX needs to be included
in the report. This includes but isn’t limited to:
·
Indicators of acute pancreatic issues
·
Indicators of dehydration – high Na
·
Low hemoglobin, potentially indicative of
gastrointestinal bleeding
d)
XXX and XXX
policies and procedures relevant to this
incident should be included in the report, including but not limited to:
·
Ethics policy
·
Dignity and respect for residents
·
Pain management
·
Reporting to doctors and family
e)
College of Nurses Nova Scotia policies related
to safety, comfort, dignity and honesty should be included.
f)
A XXX organizational chart identifying job titles; their roles in
resident care as it relates to the complaint should be included.
g)
Training/licensing/certification etc.
requirements for all relevant staff. Confirmation or not that all staff have
their required training and certification.
h)
What staff were working the weekend of the
incident, numbers and roles. Was there a shortage of staff?
i)
Who at XXX is responsible for reporting to doctors and
family? Why wasn’t it done?
j)
What incentives or disincentives does XXX have in place for XXX and XXX staff to manage pain?
Report health problems and pain to the facility doctor and the resident’s
family? Is there a financial cost to XXX for bringing in a doctor and managing pain?
k)
Why did the staff do nothing while noting that
Mrs. Macomber was in pain and that it was abnormal?
l)
Why did staff say that Mrs. Macomber refused to
take her acetaminophen when they could see she was screaming in pain and asking
for help? She very clearly couldn’t take it. This doesn’t make sense. What care
policy does it relate to? Is this an acceptable reason for leaving someone in
severe pain - that they’re in too much distress to take pain relief?
m)
A signed copy of Mrs. Macomber’s pathway of
care, outlining the care she was to receive. It reads, “Goals of Care and
Interventions are for physical, psychological and spiritual preparation for a
natural death. Maximal efforts are directed at compassionate symptom and pain
control. Goals of Care and interventions are for cure or control of an acute
treatable illness or injury. The resident may be transferred to hospital for
limited diagnostic, invasive and / or therapeutic treatments for reversible
conditions (e.g. pneumonia).”
n)
XXX did blood work on September 5. Why was the bloodwork
ordered? Why weren’t the abnormal results - low kidney function and low
hemoglobin, reported to me?
o)
What records of bowel movements did XXX record? Was there
blood noted in the stool at any time?
p)
Are there standards, industry best practices or
related for pain management in long term care residences? Does XXX meet these standards?
q)
Is there any pattern or repetition in complaints
about XXX?
r)
I will be reviewing Mrs. Macomber’s autopsy
report and hospital records as a result of the findings to date. My
documentation to receive these reports is in, but health staff tells me that
due to the volume of requests it will be more than thirty days to receive them.
I will forward the reports and any additional questions they may trigger as
soon as possible.
s)
After receiving the Preliminary Investigation
Report I did not have access to the XXX records I’d previously received. Additionally I required
more information than previously required. I’m in the process of acquiring
these records and will forward any additional feedback they may trigger.
t) Please ensure that all legally required reporting of neglect or abuse, or strong indicators of neglect or abuse, are actioned. This includes reporting by XXX staff.
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