Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
Factors to consider in making the vent decision
I include this for anyone who wants a different perspective than what I have offered. I will say that I do not agree with this much formality. To me it boils down to a simple question: do you want to live? It the answer is “yes” then disregard the following and get on with your life. It is all about “attitude”
For me to answer the trache/vent question I think it is (and should be) much simpler than the following extensive list. Have our lives really come down to a grocery list of pros and cons?? How sad!
What ever happened to simply saying "I want to live longer" or coming to the conclusion you don't want to continue on.
Simple question: DO I WANT TO LIVE? yes/no.
Once that is answered you take steps to realize your desire.
I know a lot of you are
thinking....."no Joel, your wrong, its NOT that easy!" Your right, it isn't easy,
but it's not impossible either! Humans are amazing in their abilities to adapt and
creatively make things happen. We keep reading stories of people defying the odds
and doing remarkable things. We/You can do amazing things as well if we REALLY want
to.
Some of you are not ready to move to a place where you can receive the help you will
need, but if you want to live longer you might have to consider this.
We each have,
within our power, what is needed to live longer if we want. Some choices will not
be easy!
The bottom line is (psychology 101) if you want something bad enough you will find
a way to get it.
I imagine this will stir a few people. Please understand that all
I am saying is we can always find a way to get what we want and overcome obstacles
if we want it bad enough.
God Bless us all!
Now the article:
Tony Wallace
Navigating Through ALS
navigatingthroughals.blogspot.com
The decision about whether or not to go on long term mechanical ventilation (LTMV)
is one that I have been thinking a great deal about as I enter my third year with
ALS. The decision about whether or not to undergo a tracheostomy and go on invasive
ventilation is probably the most important decision an ALS patient will make. Moving
to LTMV can add years to a patient's life. The decision not to accept LTMV for a
patient with lung function below 50% yields a much shorter life expectancy.
I have
read articles and talked with family members, healthcare and social service professionals
about the factors patients and family members should consider in reaching a decision.
I have also spoken to other ALS patients about the decisions they have or would make,
the factors they considered and the costs, benefits and burdens of mechanical ventilation.
Recent
research shows that at any given time, about 5-8% of ALS patients in the US are utilizing
LTMV. Studies show that more than half were placed on a ventilator without prior
informed consent. This generally happened when the patient was hospitalized for an
emergency procedure during which intubation was performed.
Studies performed in other
countries concerning adoption of LTMV suggest that cultural values may play an important
role in reaching a decision. Some of the factors that affect this decision include
the role of the various players (patients, family members and physicians) in making
the decision and the availability of a national health program private and/or long-
term care insurance that covers home ventilation. A Japanese study showed that 45%
of ALS patients opted for the ventilator, because national health care programs covered
costs. In the U.K. however, studies showed that virtually no ALS patients opted for
LTMV prior national health insurance covering home ventilation.
It occurs to me that
the decision-making process that I have been through might be of use to others with
ALS who will face the same situation. Therefore, I have worked with Deneen Palmer,
a home healthcare provider with years of experience working with ALS patients, to
review the literature on decision making about mechanical ventilation. We have drawn
on important medical journal articles to answer our research questions and have developed
questionnaires for patients, family members, and professionals. At the heart of these
questionnaires is a list of factors that I believe can be helpful to PALS making
this momentous decision. I offer this to the ALS community b/c I think it is very
important in assessing the pros and cons of moving to the vent. I would love to hear
from the community about my choices and I welcome comments and suggestions of additional
factors.
Before getting right to the list of factors, I offer this list of generic
questions designed to elicit information about PALS. The questions may be used to
sort out the population of PALS prior to use of a research questionnaire. They cover
a description of the current state of the disease, attitudes and support levels of
a PALS. The early questions deal with demographics and diagnosis details. The latter
address quality of life and attitude. The "edgier" questions are at the end of the
list b/c researchers tell me that if you put them up front people might not want
to finish a questionnaire.
My intent is not to collect data from the questionnaires
but just to provide ideas and a starting point for a specific research project or
further discussion of PALS-specific topics.
Comments and additions welcome.
Questionnaire
for all ALS patients
1. What stage are you in the disease? (add scale)
2. How many years since your diagnosis?
3.
How old are you?
4. Do you have children? If yes, what are their ages?
5. What is your
marital status?
6. Do you live alone?
7. What kind of insurance coverage do you have?
8.
What do you consider as good quality of life for you?
9. What was the most difficult
transition for you (i.e., transition to wheelchair, feeding tube, etc.)?
10. Do you
attend any type of support group meetings (ALS Association, MDA, other)? Are they
helpful?
11. Has the ALS Association, Muscular Dystrophy Association or any other
social service and/or health care organization assisted you in dealing with the disease?
How?
12. How do your religious beliefs help you cope with the disease and does religion
have any bearing on your decision for or against invasive ventilation?
13. Where do
you stand in your attitude toward your ALS diagnosis? (please select one of the choices
listed below)
Denial
Bargaining
Anger
Depression
Acceptance
14. Have you ever contemplated
suicide?
Factor Introduction and Questionnaire for those who are undecided.
Here they
are. It might be helpful to read this list keeping in mind a scale of importance
i.e:
A- very important
B-somewhat important
C-of minor importance
D-not important:
Someone
may want to do a survey like this in the future but it won't be me.
1. Concern about
negative aspects of life on the ventilator
2. Making the decision to turn off the
ventilator
3. Being unable to communicate (being "locked in")
4. Desire to extend my
life expectancy
5. Concern about the burden or additional burden on spouse, caregiver
and/or family members.
6. Concern about the additional cost of home healthcare provided
by nursing assistants or nurses and other professional and non-professional homecare
providers.
7. Desire to witness the growth of children, or other important milestones
such as graduation, wedding of an adult child.
8. Desire to stay alive to provide
financial support for my family
9. The availability or lack of long-term care or private
insurance
In addition to an analysis of these factors, I suggest those who are undecided
ask themselves the following questions:
10. To what extent have you discussed this
decision about LTMV with your spouse, family, friends, physician, members of healthcare
provider team?
11. What are your spouse's or caregivers' feelings about the LTMV decision?
12.
When do you plan on making the decision about whether or not to use LTMV
