Through the Eyes of a
the Signs of Death Approaching
(by Suzanne Hetherington)
are many times in a hospice nurse's day that
the question"How long?" is asked.
There are certain signs and symptoms that
can help the caregiver and nurse anticipate
when the process of dying has started or when
death is imminent. While there are some common
factors that exist in all deaths despite age,
gender and disease process, it is important
to remember that not every patient experiences
each and every of the following signs or symptoms.
on her way to a home care visit with
volunteer Panchanan Pandey
The presence of these "signals" listed
below allows the nurse to anticipate the needs
of the patient as s/he moves into the actual process
of dying and therefore allows for communication
with the family about what is happening.
This is by far the hardest part of being a hospice
nurse. Some families are more closed about the
process and don't want their loved one to know
they are dying. I believe, as do many of my contemporaries,
that all patients know that they are dying; some
just accept it more than others. Some patients
are very open about dying and talk about death
as if it's the natural thing to do... which it
The Signs: Recognition, Explanation and Solutions
The signs/symptoms of death approaching include:
drowsiness, an increased need for sleep and/or
unresponsiveness; increased confusion, an inability
to identify loved ones; restlessness (pulling
at bed sheets, having visions or a feeling of
being uncomfortable); decreased socialization,
withdrawal; a decreased need for food and fluids
or an inability to swallow; a loss of bowel and
bladder control; skin becoming cool to the touch
or a noticeable bluish tint to the feet and hands,
known as cyanosis or mottling; rattling or gurgling
sounds while breathing; increased difficulty with
pain control; and involuntary movements known
When a hospice nurse arrives at a patient's home
for a visit, it's usually the family that has
noticed something different. They may not understand
what is going on, but they do realize that something
is different. Usually, but not always, it's the
confusion and restlessness that comes first. A
family member might say, "He was up all night."
or, "He is talking silly talk. It just doesn't
If this is a new problem, the nurse will understand
that some metabolic changes are now occurring
and begin a thorough assessment. She may notice
that hands/feet are now cold or pain medication
wasn't given in a timely manner. At the end of
the assessment, while the issue is still fresh,
opening up a conversation about what sees vs what
the family sees is very important. This could
include a detailed explanation starting from the
top of the head and going down to the feet and
hands, explaining what is happening to the patient.
Showing the family what changes are seen by her
and in a loving and kind manner, giving an explanation
and possible suggestions to help with the patient's
comfort, is very important for the hospice nurse.
Medication can be given to control pain, to help
with agitation and even to help sleep. Oxygen
can be used for respiratory comfort and a different
bed or mattress could be provided. It's important
that the nurse has a suggestion or solution to
the problems at hand as this allows the family
to develop greater trust in her and feel more
secure in knowing that their loved one will be
cared for right up to the end.
Patient A was a 24-year old female who lived
in India with a diagnosis of rectal cancer. Her
decline was two weeks in duration. I knew from
the first meeting that her family was aware of
many problems she was having, however, they chose
to retain the thought that she would get better.
I spoke to her sister often and even though she
understood what I was telling her, she chose not
to translate this to her mother. The patient's
main problem was difficulty in maintaining pain
control due to the increasing spread of cancer.
She experienced a loss of bowel and bladder control
which was very upsetting for her, however her
inability to sit up or stand was so exhausting
that in the end she relinquished her efforts and
remained incontinent. Her family provided as good
a care as they could and never left her side.
Patient A had noticeable weight loss and had
a decreased need for food or fluids. Of all the
signs, this was what most troubled her mother.
Education was provided at each visit regarding
slower bowel sounds and nausea from eating, and
the mother was advised to provide food and fluids
only when the patient was hungry. For a mother,
feeding her child is tantamount to her getting
better. The mother of the patient chose not to
accept her daughter "starving" and encouraged
her to eat and drink water even within a few hours
of her death.
Towards the very end, the patient would sleep
for 12-14 hours per day according to her family,
and when she was awake her sentences were sometimes
"odd" and she appeared to be talking
to no one in particular. She had cyanosis of the
left elbow and her hands were always cool to the
touch. However, when she had passed on she appeared
very comfortable with a smile on her face. Her
mother was very distraught and wondered why she
hadn't got better despite all the chemo she had
been through. She could see the weight loss and
increased pain issues, but she had chosen, as
did most of the family, not to accept it.
Patient B was a 74-year old male living in the
United States. His diagnosis was leukemia. I first
met him at his home with his family after coming
from the doctor's office where they had just explained
to him that he was terminally ill and that he
would need hospice care now. He was very open
to the idea of comfort measures only and to the
support his family would receive. He was very
quiet and did not talk much during our meeting.
He did nod his head occasionally to show he understood
what I was saying.
His decline was also two weeks in duration. At
that point he was no longer able to climb the
stairs to his bedroom and was sleeping on the
couch downstairs. A hospital bed was provided
by hospice and his wife placed it in the living
room so family and friends could visit and have
a place to sit. While he was no longer hungry
and took only sips of fluids, his inability to
swallow was creating problems for him. He developed
"gurgling" sounds and oxygen was placed
for respiratory comfort. He had a feeding tube
that had been put in his stomach prior to hospice,
so his wife was able to give fluids until his
abdomen became swollen due to his loss of bowel
sounds. He suffered pain in his legs and feet
and was given morphine via a patch similar to
the care of Patient A.
Loss of bladder function occurred and a foley
catheter wad placed to decrease skin breakdown.
His family was at his bedside at all times to
anticipate his needs. He required the use of incontinence
products. A hospice aide was provided to assist
the family with bathing, turning and comfort needs
daily. This was the hardest part for the family,
to relinquish personal care to nursing staff.
Discussion took place each visit regarding peri
care (cleaning of the urinary and rectal orifices),
bathing, etc, and even though, at first, the patient's
wife stated emphatically that with the help of
her children she didn't need anyone else, it was
soon too much for her and she was able to accept
outside help. The tension she had built up was
relieved and she could now focus her attention
Had the above discussion not taken place or had
the nurse chosen not to see this as a problem,
then the patient's family would not have trusted
in her care and the end result might have been
very different. Our role as hospice nurses has
to switch at some point from patient caregiver
to family caregiver. The patient is following
his path but it's the family who is left to do
the living. They need as much compassion and care
as the patient requires.
The Comfortable Death
In both instances, despite age, gender and location,
each patient exhibited similar symptoms at the
end of life. Religion also played a large role
in their death. Patient A was Hindu. Her mother
went to the temple everyday and prayed to God
to cure her. Patient B was Mormon. His minister
came to the house and prayed with him and elders
from the church kept his family company. They
brought food so the family would not need to worry
about cooking and took turns sitting with the
patient so his wife could get a little rest.
In the end, both patients were loved and cared
for by their community and family. They both died
peacefully at home with the help of hospice. The
hospice nurse establishes an environment of trust,
answers questions truthfully and lovingly, and
helps give the patient a comfortable death in
the home with family and friends at their side.
This is hospice nursing at its best.
Aromatherapy on Home Care Visits
(by Tapasia Keet)
Since the end of October,
I have been visiting home care patients to give
aromatherapy, mainly in the form of foot massage.
We use almond oil mixed with essential oils.
This massage oil is donated to us by Mr Harlalka
from Sugandhim, House of Aromatheraphy Products
& Essential Oils in Haridwar.
an oil massage
massage works by relaxing and detoxing the
body, and the results are different for each
patient. Each situation is also different
for me. I don't speak Hindi so I have to watch
very carefully and feel what is right for
the patient that I am with. During the massage,
I see the face change, I feel the muscles
relax, and sometimes tears are shed.
A simple smile on the face of the terminally
ill breast cancer patientwho can do nothing
but sit (even while sleeping) and wait for her
suffering to come to an endis heartwarming.
It is not easy to write about my experience because
the feelings of gratitude and love that I have
when I am working with these patients are impossible
to put into words.
One patient who has a lot of pain and discomfort,
and who cannot sit because of his rectum cancer,
totally relaxed after his first massage. The next
time I came to his home with the nurse, he laid
down on the floor immediately, waiting for his
massage. The whole family was sitting around us,
but he closed his eyes and relaxed.
When I go on home visits with our nurse and driver,
I can see the light that we bring. The medical
care, the love and attention for the patient and
their family makes their situation a little bit
easier. Aromatherapy is a wonderful addition to
this care. When massage is not possible for some
reason, we provide oil and a diffuser. A few drops
of lavender oil are put on each patient's pillow.
Hospice Care in Montreal
(by Amélie Julien)
Since 2004, I have been
part of the care team at La Maison dHérelle
which is a hospice in Montreal, Canada. In the
last two years, we have received an increasing
number of requests for admittance from people
affected by both cancer and HIV/AIDS.
In 2008, 25% of our patients were diagnosed with
cancer. When a person is diagnosed with cancer
it is hard to accept because it means there is
a severe risk to his life. For a person with HIV
to receive such a diagnosis is a double blow,
as he is learning for the second time that his
life is hanging by a thread.