Life Support Issues/Taking away life support
QUESTION: My daughter was without oxygen for over ten minutes and has been in the ICU of the hospital and is now in a nursing home. She is on life support as she has a ventilater, feeding tube, and trach. The doctors feel that she will not "come back and that she is in pain". Her father, brother and I are in the stages of deciding to take her life support away. She will be given meds to make her comfortable. What will happen and how soon will she be gone?
I am so sorry that this has happened to your family. It is wise of you to gather information to support you in this "letting go" process. I have been with families who made these decisions. It requires a great deal of love and trust. There can also be a tendency to put off the decision because it is so painful to the decision-makers.
It seems like there are several options but your doctor can better outline them than I. The information I am providing is a reflection of what I have read and seen in my care of hospice patients. Below are the options I have seen offered to families.
Remove the ventilator: I have seen some patients who after their ventilator was removed, live a few minutes and some that lived a few days. I have read about others who lived months. It depends on how dependent she is on the ventilator to breathe. When they remove her ventilator, they will give her medications that take away her breathlessness and promote her comfort. If she survives off the ventilator, the next hurdle could be how to manage pneumonia. Immobile patients tend to develop pneumonia. Some families decide not to treat any pneumonias with antibiotics. It can be aggressively treated with comfort medications to control any pain or shortness of breath she may experience.
Discontinue feeding and hydration: The research shows that patients at the end of life do not experience hunger when feeding is stopped. The research shows that they actually do experience hunger if they are fed small inadequate amount of feedings. So cutting back on feedings may not achieve comfort goals. I have read that healthy patients can live up to 60 days after feeding is stopped IF they continue to receive artificial fluids. If fluids are stopped, my experience is that they live anywhere from a few hours to 7-10 days depending on how hydrated they were to begin with. Research on patients in a hospice that became dehydrated showed that the only symptom they had was thirst and it was easily managed with frequent use of mouth swabs. It showed that artificial hydration did not make them more comfortable and they did not live any longer. There is a theory that in the process of dehydration, the body releases substances like endorphins that promote comfort during the dying process. Artificial fluids can add to discomfort. Patients can develop secretions in their throat which require suctioning and that can make breathing more difficult. They can develop swelling of their entire body, making their skin vulnerable to breakdown.
In the hospital, it can get very confusing when the doctors and nurses say different things about her condition. She probably has a lot of specialists and they view her condition from the perspective of the organ they are working with. For example, the kidney specialist may say her kidneys are better and the lung specialist may say that her lungs are worse. It can be hard to get a clear picture of her overall condition. You have some resources in the hospital that can help you. Often there is a chaplain available and of course the ICU nurses are a wonderful source of support and information. You can also ask for an Ethics Committee consult to help you sort out information if you have trouble deciding. Many hospitals now have Palliative Care physicians who can consult. They are experts in making patients comfortable.
I hope that I have provided you with the information that you are looking for. I wish for you family peace and clarity during this stressful time.
In addition to making the end of life medical decisions, itís important to say what you need to say to your daughter. She can still hear you. Spend some time alone with her at the bedside so that you get a chance to say goodbye.
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QUESTION: You mention the hospital setting. This will be in the nursing home. Is there any difference? For personal reasons I wish to say my goodbys when I am alone with her, perhaps even before the day of withdrawal. Is this okay or can it scare my daughter? I know I have to let her go but I am scared and don't want her to go in my heart. I know this is absolutly no quality of life but I still want my baby back. My baby is 29 and has a 7 yr old son and I am scared for him also. He has been in counsiling for three months so far but this is going to be very hard for him. He says he wants his other mommy back. Sara has an ex husband who insists on calling her his wife and that they are married. He just recently got out of prison and they has only been seeing each other a couple of weeks before this happened. The family doesn't want him to know what is going on. He has been there for her everyday for the past three months and he has been a great help to me also. I feel that he should be told closer to the date of departure rather than after the fact so that he can prepare himself. He WILL fly of the handle and say we are killing her and that she can get better. He has been in major denial through all of this saying she is getting better everyday. He will be very difficult to deal with and I, for one, don't need that. We are not planning on him being there which was her father's choice and I agree. Do you think he should be told ahead of time or after the fact? I feel like I have no answers to anything these days and I hope it okay to turn to you. Thank you so smuch.
The nursing home should do a find job. Ask them if hospice services are available as the hospice team could be a very good support to you. They could also support her ex-husband and help him understand why decisions were made and they will provide bereavement services to everyone afterwards. If there are no hospice services in the facility, the social worker and chaplain of the facility could be a good support to her ex-husband.
As you know already, he has no legal rights in this situation. Since he has been helpful to you, I would tell him that you appreciate how he has helped you but now you need to make difficult decisions and ask for his support. If he reacts badly I would limit contact with him and not keep him informed. There are people who have limited ability to grieve. They only know how to be angry. You are not going to be able to take care of him in addition to everyone else. You can express your concern to him about his well- being. You can suggest to him that he get some help for himself. You have your hands full looking out for your daughter and her son. I agree with your husband that I would not tell him what the decision is until the time is near. That gives him an opportunity to say goodbye but less opportunity to create difficulties. I would do as you are doing. Stay focused on what is best for your daughter. Ask him to understand your difficult position and stay the course on what is best.