Introduction
I’m writing this because I
still hear people talking about a family member suffering terribly at
the end of life. In most cases, terrible physical suffering through the process
of dying is an indication that quality of care is lacking. My focus is on cancer, but concepts apply to other conditions.
With current standards of
care about 90% of patients with cancer pain can have their pain managed (i.e., acceptably
pain-free and alert) with conventional means such as oral morphine and adjuvant
medications (1). Most of the other 10% can be managed with alternative
measures, such as surgery, nerve blocks, and so on. This has been the case
since the 1980s (2). In any care situation there may be periods when there are
problems – such as in the last few days of life – but these can nearly always
be anticipated and successfully treated.
Ways that people do (the kinds of things that begin to happen when pain and other problems are under control): There was a water sprinkler set to hit the window of the patient’s room. Her son-in-law explained that she loved the rain.
Ways that people do (the kinds of things that begin to happen when pain and other problems are under control): There was a water sprinkler set to hit the window of the patient’s room. Her son-in-law explained that she loved the rain.
Pain and suffering are not
necessarily the same. Without going into a lot of detail, physical pain usually
results from physical insult and can be enormously influenced by psychological,
social, and/or spiritual issues. Suffering can be physical, but may also be
psychological, social, and/or spiritual in nature. Most often, suffering is
multidimensional. Quality care at the end-of-life addresses all these spheres
of being.
I’m not saying it is easy to
manage pain, depression, and other problems common at the end of life. I’m
saying it can be done and should be done so that deep communication and true healing can occur.
My credentials for writing this are at the end of the post.
Living well within the process of dying
First, understand that you
have to be in charge of your illness or your loved one’s illness. Knowledge is
power. In addition to Google leading you to legitimate sites such as the
American Cancer Society, NIH, Johns Hopkins, etc., you should search Pubmed.
Pubmed is the NIH site that lists research articles (enable the abstract
feature) on everything imaginable. Pubmed searches are often not quickly
rewarding, but persistence is rewarded with breath-taking depth (this stuff
really does turn me on). Search tumor type (prostate cancer, etc.), treatment,
symptoms, and so on. One caution: not all journals are of equal veracity, so
stay with known publications like Cancer, Journal of Pain and Symptom
Management, Cochran Review, JAMA, etc. Here is a relevant abstract from Pubmed:
http://www.ncbi.nlm.nih.gov/pubmed/23881654
Ways that people do: A few days after he died, a
dozen red roses were delivered to her. With them was a note from him, thanking
her for their life together.
But can’t you just trust
your doctor to do the best thing for you? Hopefully your doctor and the institutions s/he is associated with will do what is best for you, but there can be differing agendas among
patients, families, doctors, institutions, payors, etc. Vast sums of money are
involved, providers/institutions are always
in a CYA (cover your ass) mode, communications vary in accuracy, and so on. If
you think about it, without a lot of work, it is highly unlikely that everyone
will be on the same page.
Communication
Assertive communications supported by knowledge are essential to receiving the treatment you want in terms of
quality of life and managing symptoms. Do you want to be treated with chemo,
radiation, and surgery right into critical care to die alone and in pain? The
longer aggressive treatment continues, the greater the pain and other symptoms
are at the end of life (3). That sorry story has been acted out millions of
times. Knowing when to shift the focus from cure to care is a complex and
challenging issue.
Is dignity important to you?
At what point do you want curative treatment discontinued? How much do you want
to know about the diagnosis and prognosis? Do you want to die at home or in
hospital? And much more. To do well, you have
to know about your disease and treatment – and also insurance benefits,
community resources, and more.
Some questions (more specific than is there any hope): What is purpose of the proposed treatment? The usual outcome of (1) chemotherapy at this stage and (2) surgery at this stage. Best outcome? Worst outcome? What will treatment be like in terms of quality of life during and after treatment?
Some questions (more specific than is there any hope): What is purpose of the proposed treatment? The usual outcome of (1) chemotherapy at this stage and (2) surgery at this stage. Best outcome? Worst outcome? What will treatment be like in terms of quality of life during and after treatment?
Communication is obviously
central to dealing with psycho-social-spiritual issues. Communication with
loved ones can be painful – which often is an indication that the communication
is important.
Ways that people do: One of my students told me that when she was
young her sister had advanced leukemia. They slept in twin beds in the same
room. One night, when the lights were out her sister said, “I’m afraid.” My
student answered, “Me too” and got into bed with her sister. They slept
together that night and all the rest of the nights her sister lived. Despite
the fact that everything changed for the better, my student still wondered if
she said the right thing.
Why would she wonder if she said the right thing? Because in her (white
middle-class) culture, people are supposed to be brave (or pretend like it).
They are supposed to be positive. They are supposed to have faith. What a load.
How about being brave enough to be honest. How about respecting the person who
is dying enough to treat that person as an adult deserving of open, honest and
loving communications. How about having about as much faith and positivity as
Jesus Christ. “My soul is sorrowful even unto death (don’t leave me).”
When everyone is brave and
positive in a false front, the result is often emotional isolation for everyone
concerned. What a tragic waste of energy and precious time.
Ways that people do: It was about two weeks
before Jan died. Her mother was painting Jan’s toenails. “I guess you’re
wondering why we’re doing this at a time like this.” “No, not really.”
When should hospice be involved?
Hospice services should be
started early in the process of terminal disease, before symptoms are severe or
psychosocial or spiritual problems develop.
It is a fundamental and grievous mistake to wait until things are bad to get into hospice care. Hospice is not an admission that nothing else can be done. Hospice (a good one anyway) is an affirmation of the fullness of life – physical, psychological, social, and spiritual. All these aspects of being are addressed in hospice care. As a result, quality of life is improved in most cases, especially when hospice is involved earlier than later.
Are people who are dying usually distressed to have hospice care introduced? No; they are often relieved.
It is a fundamental and grievous mistake to wait until things are bad to get into hospice care. Hospice is not an admission that nothing else can be done. Hospice (a good one anyway) is an affirmation of the fullness of life – physical, psychological, social, and spiritual. All these aspects of being are addressed in hospice care. As a result, quality of life is improved in most cases, especially when hospice is involved earlier than later.
Are people who are dying usually distressed to have hospice care introduced? No; they are often relieved.
Managing pain
Here are some of the keys to
successfully managing pain. These are applicable to other symptoms of advanced
disease as well.
Oral medications are the first choice except when the pain is first being brought under control - when intravenous or intramuscular medications are used. Controlled release morphine is the first drug of choice for patients with chronic cancer pain. Intermittent patient controlled analgesia (PCA) via pump is fine for pain after surgery, but is inappropriate for severe and chronic cancer pain.
Oral medications are the first choice except when the pain is first being brought under control - when intravenous or intramuscular medications are used. Controlled release morphine is the first drug of choice for patients with chronic cancer pain. Intermittent patient controlled analgesia (PCA) via pump is fine for pain after surgery, but is inappropriate for severe and chronic cancer pain.
Issues of addiction and tolerance are addressed
at the link below. Suffice it to say here, in terminal illness, addiction is
not a problem (for several reasons) and tolerance is easily treated.
Medications should be taken on a schedule so
that a relatively constant effect is maintained and pain does not recur. It is
better to wake the patient for medicine on schedule than to let him or her
sleep and then wake in pain. In other words, do not wait until pain is felt
(much less, is severe) to take medications.
Primary side effects of morphine and other
opioid (narcotic) medications include nausea and constipation. Nausea resulting
from morphine or other opioid is what is known as an initiating side effect,
i.e., it occurs when therapy is begun and usually ceases or at least decreases
after a few days. When a person experiences nausea from morphine or other
opioid medication, the antiemetic is then given on schedule so that nausea is prevented. Often the antiemetic can be
discontinued in days or weeks. Constipation
is ongoing and treatable.
Other principles are discussed at the link
below.
You can see the basic idea
is (once under control) to prevent pain, nausea, etc. Basically in a pain
situation it is nothing other than gratuitous cruelty to demand that a person
suffer before receiving relief.
Ways that people do: The hospital bed was in the
living room so that he could look out into the neighborhood where they had
lived all these years. He could see a rose bush he’d planted long ago.
Did you ever have a painful
procedure or treatment done and were given pain medication after the treatment?
That’s not quality care; it’s poor care that demonstrates a lack of concern
about you. It is not rocket science. MEDICINE SHOULD BE GIVEN/TAKEN BEFORE THE
PAIN EVENT AND/OR BEFORE PAIN RECURS.
“The link below” No longer operational
This links to a website I
created – Terminal Illness: A Practical Guide for Patients, Families, and
Providers (hosted by Baylor University). There are straightforward discussions of what
to do about pain, difficulty breathing, depression, anger, etc., etc.; how to
tell when someone is dying; organizing family and friends; and many other problems
and issues of dying. There is also a good low-cost
coffin resource on the site.
I invite
you to use this website, as well as Pubmed and other suggested resources to do
the work that will ease your loved one’s passing as well as your own passing. Link does not work
Ways that people do: “Finally, we’re being honest
with one another.”
References
(1) Oral morphine for cancer
pain. http://www.ncbi.nlm.nih.gov/pubmed/23881654
(2)
Coyle, N., Adelhardt, J.,
Foley, K.M., & Portenoy, R.K. (1990). Character of terminal illness in the
advanced cancer patient: pain and other symptoms during the last four weeks of
life. Journal of Pain and Symptom Management.
5,2.
(3) Predictors of Symptoms
and Site of Death in Pediatric Palliative Patients with Cancer at End of Life.
Credentials
My credentials for writing
this: I have provided care (as an RN, later as a nurse practitioner, and also as
a volunteer) for many people at the end of life. I founded the first hospice in
Texas, which, when I left was serving more patients than any other hospice in
the US. I have taught palliative and hospice care in undergraduate and graduate
schools and have written a book and about 30 articles and chapters in
professional journals/books on end-of-life care.
