Here is an example that can happen with anyone, not just dementia patients, that
throws time predictions about their imminence of death out the window. Around
60% of people with dementia die from either a bladder (UTI) infection that
becomes septic or a lung infection. The progression from onset of infection to
death due to sepsis can happen to anyone and can happen in as short as 48 hours.
A UTI is a Urinary Tract Infection. It is the most common type of infection, and
here’s how that progression often goes from infection to sepsis (overwhelmed
immune system) and then to death. Patients lose the ability to empty their
bladder properly, and many wear pull-up briefs for a long time, so bacteria are always
present on the skin. When urine remains in the bladder because of incomplete
emptying and the patient doesn’t clean carefully, a bladder infection can happen. A
common symptom absent in patients who lack awareness of their body is that they
may not feel any pain when they urinate. Family and staff don’t know until major
changes occur in the patient’s condition in that circumstance.
A person may become septic if the infection isn’t treated in time. That can mean
that the infection is in the bloodstream and therefore spreading to all the organs
and tissues, overwhelming the organs and possibly leading to death. Many people
can survive sepsis if their immune system is strong and they get the right
medications soon enough. A signal that the body is overwhelmed is that all the
organs start shutting down. If a person is at the hospital and not in hospice, they’ll
do blood tests frequently and be able to see the changes indicating that the liver, heart, and kidneys are shutting down and do something about those symptoms.
In the home or nursing home, a hospice patient does not get any tests that require
needles, so blood draws are not done. Even without machines and tests, one can
tell from the urine output how the kidneys are doing. They can tell by assessing the
person’s color from head to foot and know if the heart and circulatory system are
shutting down. They know from speaking to the patient about their cognitive status
and during turns and personal care in the bed about their muscle strength and
independence of movement.
It may only take 48 hours for organs to shut down completely, and the person dies.
In most instances, it happens so fast that people die with no apparent pain. Pain and
anxiety meds are available and used both in facilities and homes where patients
live if needed.
The sudden changes that happen when there’s a bladder infection can include loss
of balance and strength, resulting in falls, loss of appetite, and thirst, which leads to
dehydration, and of course, which came first, the dehydration or the infection?
People become confused, and some even become delusional or have hallucinations.
The correct antibiotic will usually resolve all of that in 7-14 days. But if the person
has no fever, and doesn’t complain of pain, and wears a brief, no one knows if they
have an increased frequency of urination, another sign. So how can we tell if
they’re infected? Another symptom to watch out for is the color and smell of the
urine. And if they wear briefs, there will be a brownish color and a strong odor of
infected urine. Did the infection get treated in time, or too late? Only time will tell.
This example brings up a very important and not uncommon reality about hospice
care; antibiotics may delay a person’s death but not prevent it. Fact: a person is in
hospice because they have a terminal illness. Fact: Many people have repeated
infections that they have recovered from due to antibiotics but never recovered
to the full functionality they had before. Fact: Each body dies from one or another
medical problem that overwhelms their ability to have a life of quality as they
define it. Fact: Repeated infections can be construed as how this particular body presents the cause of death most likely will be.
In other words, this body is telling everyone what the exit strategy (cause of death)
might be. If there are repeated infections, the hospice staff will ask the family
whether treating what is expected to happen in the future is best. If there are
symptoms of pain, treatments are absolutely given. If there are no symptoms,
which is the case with most sepsis patients, is there a benefit to treating, or should
we allow the person’s body to finish up what they started to permit the ending that
seems to be desired?
This is what I call a tough love situation in hospice!
Another lesson learned over the years was that many patients with that
constellation of symptoms were being admitted to hospice only to find that the
person was not near death. Many people recover close to the functionality they had
before the infection. Some hospice programs will continue services for the first 90
days, which is the first certification period, but when the person recovers
sufficiently, they must be discharged from hospice, even if it is less than 90
days. CMS is quite strict about the patients' meeting admission and criteria during the full certification period. Those rules have taught
most hospice programs to wait at least 14 days post diagnosis and treatment of a
UTI, to know if hospice is the correct direction for the care of the patient.
To purchase Barbara's book, Demystifying Hospice, you can purchase a signed copy or downloadable PDF at Author Spots or a digital copy on Kindle Ebook
