Question

Why do you think end of life decisions are so difficult for families and what can be done through our current health care system to improve the process?

Answer 1

End-of-life (EOL) decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process.Making a decision for a family member at the end of life is one of the most emotionally difficult decisions families will ever face .How this decision is managed has important implications for the patient’s quality of life at the end and affects family members’ emotional well-being long after the decision has been made .During decision-making, families encounter various dilemmas and challenges, including uncertainty about what to do and how to behave .The complexity of EOL decision situations creates a number of dilemmas for family members required to make a decision for a loved one at the end of life. Family members may face challenges in obtaining the information needed to make a good decision or knowing when a decision point is nearing . Without adequate information from health care providers to inform the decision, families can experience resentment and emotional burden after a decision is made . Family members also may be uncertain about the right decision to make , even when there is an ACD in place . Family members also may be uncertain about the right decision to make, even when there is an ACD in place . Living wills, for example, do not always provide insight into the specific decision that must be made .Additionally, when family members are aware of the patient’s wishes, they still may encounter a contradiction between their own desires and the patients’ desires , often experienced as a tension between holding on and letting go. Family members also may struggle to make sense of the decision and of a loved one’s likely death.

It can be overwhelming to be asked to make health care decisions for someone who is dying and no longer able to make his or her own decisions.

It is even more difficult if you do not have written or even verbal guidance.

Even when you have written documents, some decisions still might not be clear.

One approach is to put yourself in the place of the person who is dying and try to choose as he or she would. That is called substituted judgment. Some experts believe that decisions should be based on substituted judgment whenever possible, but decision-makers sometimes combine that with another method.

Another approach, known as best interests, is to decide what would be best for the dying person.

It is a good idea to have someone with you when discussing these issues with medical staff. Having someone take notes or remember details can be very useful during this emotional time. If you are unclear about something you are told, don’t be afraid to ask the doctor or nurse to repeat it or to say it another way that does make sense to you. Do not be reluctant to keep asking questions until you have all the information you need to make decisions. Make sure you know how to contact a member of the medical team if you have a question or if the dying person needs something.there are religious or cultural customs surrounding death that are important to you, tell the health care providers with whom you are working. Knowing that these practices will be honored could ease the dying person. Telling the medical staff ahead of time may also help avoid confusion and misunderstanding when death occurs.

Because of advances in medicine, each of us, as well as our families and friends, may face many decisions about the dying process. As hard as it might be to face the idea of your own death, you might take time to consider how your individual values relate to your idea of a good death. By deciding what end-of-life care best suits your needs when you are healthy, you can help those close to you make the right choices when the time comes. This not only respects your values, but also allows those closest to you the comfort of feeling as though they can be helpful.