Consider the patient. The most important person to consider is the patient/loved one for whom the decision needs to be made. What are their wishes, what would they want? What have they said in the past about life support, death and dying?
Put your own needs aside. The hardest thing is putting your own wants, and the need to hold on to that person, aside, and deciding in the best interest of the patient/loved one. No one wants to lose a loved one, but is holding on to a person in a vegetative state, or putting someone through pain and suffering to keep them alive, what they would want?
Talk to the physician, hopefully more than one. Ask questions about quality of life, potential outcomes, and alternatives. Don’t expect your physician or the nurse to say how long a person has to live, since no one knows that but a higher power.
Make a decision based on what you believe your loved one’s wishes would be.There is no right or wrong choice. Some people are kept alive until their body won’t function any more. Some people are taken off life support and life-sustaining treatments like ventilators, dialysis, and tube feeding and allowed to go peacefully in their own time.
Never regret your decision, it was the best decision you could make at the time.
Learn about DNR, DNI and comfort care directives.
- DNR (do not resuscitate) means nothing will be done to bring this person back if their heart stops or they quit breathing. They will be allowed to die without any measures to keep them alive. They will not have a tube put down to help them breath, they will not have someone compressing their chest to make their blood flow, and they will not be given medications to sustain life. They will still be kept comfortable, and any pain medications and treatments they are already receiving to keep them comfortable can be continued.
- DNI (do not intubate) means everything will be done to keep them alive except placing a tube down into their lungs and being placed on a ventilator to breathe. Chest compressions will still be done, and medicine will still be given.
- Consider comfort care only. You can specify that you only want measures taken to keep your loved one comfortable. No lab work, finger sticks, x-rays, or other procedures will be done. Only pain medicine and medicine to assist with comfort will be given.
- If you have a loved one in a nursing home or assisted living and they have a DNR or DNI status, obtain an armband, necklace, bracelet, or some kind of identification that states this. Many times when a resident collapses or goes into distress, the staff will not immediately remember the code status of the patient. If the patient has this identification on them and emergency personnel are called to the scene, it may prevent a person from having life sustaining measures done to them when they do not wish them done.
Know that these decisions are yours to make – nurses and doctors can not make them for you. Discuss these issues with other family members and try to come to an agreement on what you want, keeping the loved one’s wishes in mind. Feel free to ask doctors and nurses any questions you may have.
Don’t wait until the last minute to discuss this. If you have a loved one with cancer or a disease that may be life ending, find a time when you can discuss what their wishes are. Even if your loved one is perfectly healthy, having this discussion is important. No one likes to talk about death and dying, and surely not their own death, but it makes it so much better for the families when they know they are doing what their loved one wanted.
Getting the best out of palliative care – Joe and Melita’s story