The wonderful people who meet our rapidly expanding needs are really the backbone of the ALS community. They have to perform all of the household chores that we PALS used to do. They take care of us and have to fight for time to do their own chores. Given their place in our lives, I think it's important to consider their views on this decision. Below is what I've formulated for CALS. As always I welcome outside input.
Questionnaire for spouses/caregivers
1. What is your age and the age of the person with ALS?
2. How long has the care receiver had ALS? What is the disease stage?
3. Do you have young children? Adult children?
4. What type of insurance coverage do you have?
5. What factors are important to your quality of life?
6. Has the care receiver made a decision about LTMV? If so, do you agree with the
decision? What were the most important factors in the care receivers’ decision about LTMV?
7. Do you currently have some home health care services? If yes, how frequently? Is the care skilled or unskilled?
8. What has been your experience with the homecare provider or agency?
9. Do you have any medical problems?
10. If the care receiver is on LTMV, at what point will the vent be turned off? Have you
and the care receiver discussed how the patient can communicate his or her wishes in the later stages of the disease?
11. Do you feel overwhelmed by your caregiving duties?
Have you taken a respite break? Do you have plans to take one?
What activities do you use to help you cope (exercise, meditation, spending time with friends outside the home)?
12. Do you go to ALS support group meetings? If so, are they helpful?
13. Do you have support from friends, family, church, social groups, etc.?
14. Has the ALS Association and/or Muscular Dystrophy Association been helpful? How, specifically?
Wednesday, January 30, 2008
Tuesday, January 29, 2008
Those who have not chosen the ventilator
Here is my questionnaire for PALS who opted against LTMV. As you can see it's not as long as the prior two questionnaires. I welcome your input as these are in some sense works in progress.
For those patients who decided not to go on LTMV
1. What stage are you in the disease?
2. What was the primary factor in your decision against the use of LTMV?
1 Cost
2 Quality of life issues
3 Availability of qualified healthcare providers
4 Research data, case studies, or talking with other ALS patients
5 Physician advice
3. What other factors influenced your decision?
4. Does your spouse or caregiver agree with your decision?
5. Do you regret the decision you made?
Friday, January 25, 2008
Those who chose the ventilator
One of the physicians I consulted in preparing these questionnaires thought they would be the basis of a very useful study. Understanding the decisions of PALS on both sides of the issue would certainly be important for such a study. Here I have developed a questionnaire for those who positively decided to go on a vent. If you are a PALS to whom this questionnaire applies I would especially like to hear from you on your thoughts about life on LTMV. The next post will address those who opted against LTMV.
For those on the ventilator or have decided to go on it:
1. How long have you been on LTMV?
2. Was this your decision , made in advance, or was the decision made by a doctor or medical professional during a medical emergency?
3. What is it like to be on a vent?
4. Have you chosen invasive ventilation in the hopes that a cure will be discovered
for ALS?
5. Does your spouse or caregiver support your decision?
6. How did/will you set up your team of skilled and unskilled home healthcare providers?
-What was it like to get your homecare providers to learn your particular care regimen?
-How did/will you finance your home healthcare?
-How did/will private insurance-long term care help?
-Did limited financial resources force you to accept a lower standard of care?
-Is hospice a part of your healthcare provider team?
-What was the most difficult procedure, treatment, etc. for your spouse/caregiver to master?
-What was the most difficult procedure, treatment, etc. for your skilled and unskilled home healthcare providers to master?
7. Have you had any serious illnesses or hospitalizations since you have been on the vent?
8. How has your being on the ventilator affected your spouse/caregiver?
9. What additional burdens can the patient and spouse/caregiver expect to have as a result of being on a vent?
-Cost
-Quality of life issues
-Decision of patient and/or family to turn off the vent
-Availability of qualified healthcare providers
10. Have you and/or your spouse/caregiver thought about turning off the ventilator?
11. What circumstances or situation might lead to the thought of turning off the ventilator?
12. What changes have occurred in your activities of daily living?
13. Would you make the same decision again if you could do it over?
14. Please list other factors that were important in your decision.
15. What are some of the issues other patients and family members should consider in deciding whether or not to go on the LTMV?
For those on the ventilator or have decided to go on it:
1. How long have you been on LTMV?
2. Was this your decision , made in advance, or was the decision made by a doctor or medical professional during a medical emergency?
3. What is it like to be on a vent?
4. Have you chosen invasive ventilation in the hopes that a cure will be discovered
for ALS?
5. Does your spouse or caregiver support your decision?
6. How did/will you set up your team of skilled and unskilled home healthcare providers?
-What was it like to get your homecare providers to learn your particular care regimen?
-How did/will you finance your home healthcare?
-How did/will private insurance-long term care help?
-Did limited financial resources force you to accept a lower standard of care?
-Is hospice a part of your healthcare provider team?
-What was the most difficult procedure, treatment, etc. for your spouse/caregiver to master?
-What was the most difficult procedure, treatment, etc. for your skilled and unskilled home healthcare providers to master?
7. Have you had any serious illnesses or hospitalizations since you have been on the vent?
8. How has your being on the ventilator affected your spouse/caregiver?
9. What additional burdens can the patient and spouse/caregiver expect to have as a result of being on a vent?
-Cost
-Quality of life issues
-Decision of patient and/or family to turn off the vent
-Availability of qualified healthcare providers
10. Have you and/or your spouse/caregiver thought about turning off the ventilator?
11. What circumstances or situation might lead to the thought of turning off the ventilator?
12. What changes have occurred in your activities of daily living?
13. Would you make the same decision again if you could do it over?
14. Please list other factors that were important in your decision.
15. What are some of the issues other patients and family members should consider in deciding whether or not to go on the LTMV?
Wednesday, January 16, 2008
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?
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?
Sunday, January 13, 2008
Pets for PALS
Have you noticed that almost every edition of the NBC evening news has a “creature feature”? So why shouldn’t this blog have a creature feature also? Susan and I have a thing for orange tabbies. Tigger (pictured here) is our fourth. He is an 18-pound alpha male with a highly complex personality. I have always believed that somehow animals know when you’re sick and take steps to offer sympathy, consolation, and closeness. Tigger seems to think that it’s his job to defend me from all forces of darkness, including caregivers. He sits with me in my chair by day and sleeps with me by night with his front paw draped protectively over my leg. He gives me great comfort. I welcome interesting creature features from others in the ALS community.
Friday, January 11, 2008
The DNR Dilemna
Many of us, in putting our personal affairs in order after diagnosis, establish a living will and advance directives covering procedures that we may be confronted with. The Do Not Resuscitate (DNR) statement dictates what lifesaving measures may or may not be taken in an ambulance and/or hospital. Most PALS end up choosing not to undergo long-term mechanical ventilation (vent with tracheostomy). Every state has a different approach and language in the form that all of us should have displayed in our house describing our preferences. There is a high variability in the description of the various resuscitation measures (defibrillation, intubation, etc.). In Virginia, the form does not make a distinction between various types of resuscitation. The Catch-22 for me is that the way my DNR is written, I have to rule out all forms of resuscitation; this means that if I had a heart attack, the EMTs would not be allowed to defibrillate. If I opt for resuscitation, they can do any procedure they want. Research shows that about 5 % of PALS end up trached and attached toa vent; half of that group got their vents, without prior informed consent, when they went to the hospital for a serious medical condition.
I would very much like to hear from other PALS about whether or not they are aware of this dilemma. My hospice doctor tells me that the only way to avoid my dilemma is to not get in the ambulance or go to the hospital. Heart attack victims, for example, often get intubation as well as defibrillation.
I would very much like to hear from other PALS about whether or not they are aware of this dilemma. My hospice doctor tells me that the only way to avoid my dilemma is to not get in the ambulance or go to the hospital. Heart attack victims, for example, often get intubation as well as defibrillation.
Tuesday, January 8, 2008
MDA vs. ALSA
I joined ALSA after my diagnosis in September 2004 and benefited from their publications, loan closet, support groups, seminars, funding for research, etc. Recently I also joined the ALS division of MDA (Muscular Dystrophy Association). Both organizations do outstanding work in support of the ALS community. MDA, the older group, reaches millions for research and provides an excellent range of publications. ALSA is particularly good in raising funds through their annual walks in cities all over the U.S. Both groups are dedicated to finding a cure for ALS and for providing the latest information to the community. I sense, however, that the two organizations seem to treat the other as a rival rather than a partner. Without naming names, I have noted that when one of the two groups hosts an important event, such as a research seminar, no attempt is made to circulate the news of that event to the other organization. One of the two organizations, in its briefing materials, did not include the other group as a local resource in the D.C. area. I am saddened by this and I can only reiterate the feelings of the boy who famously asked, “Say it ain’t so, Joe.”
Comments are welcome.
Comments are welcome.
Subscribe to:
Posts (Atom)
