End-of-Life Wishes What Everyone Needs to Talk About But No One Wants To

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​​​​​Emergencies can happen to anyone at any time. While families and schools perform fire drills in the event of a fire emergency, families are not often prepared for medical emergencies that can end with death or significant disability. Even when death follows a prolonged illness, families are too often not prepared for it. Doctors do not always have end-of-life discussions with their patients when they are still capable of making their own decisions. Not everyone has an advanced directive that expresses their wishes in the event of an emergency or death. Doctors are then left asking family members to make decisions on behalf of their loved ones. Doctors expect (and hope) that families will know the wishes of their loved ones in medical emergencies and at the end of life, but if you have not had a conversation about this with your loved one before, it may be hard to make the decisions in a time of crisis. Here are some things to think and talk about with your family to prepare. 

Pick a Person

First, everyone needs a spokesperson. This person should be someone who can speak and make decisions for a loved one if he/she cannot make or communicate decisions. This designee goes by many names – a health care proxy, surrogate decision maker, power of attorney for health care, etc. If you or a loved one does not designate a person, each state has laws regarding who is the default person. This could be a spouse, adult child, sibling, parent, etc. Importantly, make sure to tell your spokesperson that you want him or her to be in that role, and tell other friends and family who you have designated. For example, if you have a spouse but want your brother to be your decision maker, be sure to tell your spouse that he/she is not your designated person.

When You are the One

If you are the decision maker for a loved one, make sure you know so you can have a conversation about their goals and wishes, know their wishes and then communicate those wishes to the medical team. The responsibilities of the medical spokesperson are to accept or decline medical interventions based on what your loved one would want. This can include consenting (or declining) surgeries, tests, blood transfusions, advanced life support and other treatments and interventions. Some states have "orders for life sustaining treatment." These are medical orders listing different medical interventions and options. They allow doctors to know what medical treatments someone would or would not want if unable to speak for him or herself. Sample statements can be found online. These need to be signed by a health care professional, so be sure to bring to your or your loved one's next primary care visit.

In Sickness

Doctors are not good at predicting exactly how long people will live. However, there are some conditions that are considered incurable and will ultimately cause death. If you have a loved one with an incurable condition, such as some cancers and heart or lung disease, a doctor may have started discussions about end-of-life care. Some issues that may come up: 

  • Would your loved one want artificial nutrition or fluids through a feeding tube?
  • Would he or she want to be connected to a breathing machine if unable to breath?
  • What about connected to dialysis machines to do the work of your kidneys in the event of kidney failure?
  • Should palliative care be included in the treatment plan?
  • Transition care to hospice?
  • Receive chest compressions and CPR (cardiopulmonary resuscitation) if his/her heart stopped?

These are important things to discuss with your loved ones and their health care providers. Health care providers also help give a better sense of what each of these things means on an individual basis and how likely one is to ever need any of these.

Life After Death

The most difficult time for families is sometimes immediately after the death of a family member. There are still other things to be considered, though. Would the deceased loved one want an autopsy? Sometimes this is required, but if not, it can still be done at the request of the family. Would the deceased want to be an organ or tissue donor? Some people register online or on their driver's license ahead of time, but it is important to make sure this gets communicated to the medical team so the necessary organizations can be contacted. Does the deceased want to donate his or her body to science? This can sometimes be done through a state anatomy board, local university or museum for research and educational purposes. This may need to be arranged in advance, but if the wishes are known, the medical team may be able to help facilitate this transition.

Talking about emergencies and the end of life is not fun and can be difficult for families and for health care professionals. While we can always hope for the best, it is important to be prepared for the worst. Having conversations early with your loved ones during the best of times can help prepare everyone for the worst of times. And don't forget to include your health care provider in these conversations. 

originally posted on ​U.S. News and World Report Health​​​​​​

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