Factors to consider in making the vent decision

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?