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?
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2 comments:
1. How long have you been on LTMV?
-My wife JoAnn was on the ventilator for almost 3 years.
2. Was this your decision, made in advance, or was the decision made by a doctor or medical professional during a medical emergency?
-This was a family decision, made ultimately by my wife in advance.
3. What is it like to be on a vent?
-I cannot speak for my wife but here are some of the things that I observed. After getting the ventilator, her vital signs greatly approved. After she was completely healed post-op, she never complained of any discomfort/complications caused by the ventilator.
4. Have you chosen invasive ventilation in the hopes that a cure will be discovered
for ALS?
-We chose long term mechanical ventilation. Not in hopes for a cure, rather to maintain quality and a prolonged life.
5. Does your spouse or caregiver support your decision?
-Yes, I supported her decision 110%
6. How did/will you set up your team of skilled and unskilled home healthcare providers?
-With the assistance of family members, privately contracted nurses, and nurses provided through veterans affairs.
-What was it like to get your homecare providers to learn your particular care regimen?
-Through constant training, teaching, and reevaluating problematic issues.
-How did/will you finance your home healthcare?
-Through personal funds, social security, and veterans affairs.
-How did/will private insurance-long term care help?
-My wife was retired military; most of her care was funded through veteran’s affairs.
-Did limited financial resources force you to accept a lower standard of care?
-No, never. Even if there were limited resources, there is always a way through family and community to provide quality care.
-Is hospice a part of your healthcare provider team?
-Towards the last 2 months of life, we did utilize hospice care. However, hospice is a great agency but does not provide sufficient nursing care or assistance.
-What was the most difficult procedure, treatment, etc. for your spouse/caregiver to master?
-Monitoring ventilating support, maintaining a patent airway and assuring proper oxygenation.
-What was the most difficult procedure, treatment, etc. for your skilled and unskilled home healthcare providers to master?
-Same as above.
7. Have you had any serious illnesses or hospitalizations since you have been on the vent?
-Pneumonia
8. How has your being on the ventilator affected your spouse/caregiver?
-My wife was often concerned the stress level of monitoring her ventilation, however through the support of nursing care and family adequate care was provided and this reduced the stress level. Also, the stress was greatly reduced by purchasing back up generators in case of a power outage.
9. What additional burdens can the patient and spouse/caregiver expect to have as a result of being on a vent?
-I would not consider regular maintenance of the treach as a burden, however this maintenance is what you sign on for when you mutually decide for mechanical ventilation. With proper education and training, it because routine and your confidence level improves and stress reduces.
-Cost
-Co shared with veterans
-Quality of life issues
-Prior to deciding mechanical ventilation, quality of life was poor. My wife was having problems breathing and felt as if she was suffocating. The mechanical ventilation greatly increased her quality of life as well as the length.
-Decision of patient and/or family to turn off the vent
-Was not turned off. The ventilator was removed after death.
-Availability of qualified healthcare providers
-Low. You have to teach your healthcare providers your specific routine.
10. Have you and/or your spouse/caregiver thought about turning off the ventilator?
-After the decision was made to choose mechanical ventilation, we mutually decided that this was a life long decision. Once the decision is made to mechanically ventilate, turning off the equipment was not an option.
11. What circumstances or situation might lead to the thought of turning off the ventilator?
-Nothing
12. What changes have occurred in your activities of daily living?
-Making sure equipment is functioning properly, and treach i.e cleaning, suction, and changing equipment.
13. Would you make the same decision again if you could do it over?
-I cannot speak for my wife again, yet I would make the same decision. With the decision to get the mechanical ventilation, we prolonged her life and made many happy memories.
14. Please list other factors that were important in your decision.
-Prolonged life
-Quality of life
-Perhaps in the future more treatment
-Making wonderful memories
15. What are some of the issues other patients and family members should consider in deciding whether or not to go on the LTMV?
-There are no other issues that I can think of as far as the ventilator. My personal experience with it was very good. My daughter, who was 14 at the time, and I were able to take care of JoAnn when she was on the vent without many complications. Learning the mechanics of vent operation is very simple and at the hospital they taught us very well. As long as the caregiver is focused and determined to take care of the patient, vent should not be a serious problem.
Ken Kayani is a very good friend who vists me regularly. We share a common passion for all things Pakistani. I served there with the State Department and we have friends in common. Ken is a wonderful man who is a big fan of ventilation. He has been working on me for months. His post was far more than I expected but it is rich in detail and the love shines through. Thank you Ken for contributing a marvelous piece to the blog. I should put you on my Board of Directors.
Tony
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