7 SUGGESTED GUIDE IN STARTING A CONVERSATION ON END-OF-LIFE CARE

  1. Take family members together, if possible.

Let us talk about important end-of-life issues when everybody is around to clarify misconceptions and ask significant questions.  Several experts have suggested that we may take advantage of any opportunity when we are together to celebrate important occasions, like birthdays, anniversaries, Christmas or Thanksgiving. We can convene the family after the festivities before everybody goes back to their respective homes.

 2. Talk to your healthcare provider about end-of-life care.

You may want to talk with your physician about end-of-life care. I have heard several doctors approach their patients in a non-intimidating way by introducing to them that filling out an advance directive and identifying end-of-life care is part of their practice protocol. This approach may suggest to patients that discussing healthcare concerns at the end of life is socially and medically acceptable. It gives patients the opportunity to think and consider having their own advance directive.

This pro-active stance is like pre-departure safety instructions.  Attendants demonstrate how to operate the plane’s oxygen system and other safety devices in times of emergency. People told me that they sometimes found this instruction threatening. It may sound like impending doom is about to happen. However, knowing that this is a standard operating procedure to mitigate the fears of aerophobic passengers. This approach may be applied on filling- out an advance directive as a common practice in healthcare.

  1. Remember that people are hungry for guidance on end-of-life care.

We may be hesitant to talk about end-of-life concerns. But many people want to have that chance to receive guidance on this area. I remember a family who had a loved one with an advanced stage of cancer. He had a poor prognosis and was given a few weeks to live. When I made a visit, I met the family members in the room grappling on how to proceed with the next move. When I asked if they had considered hospice care, everyone looked at each other, waiting for someone to make the first response.  After a moment of silence, the oldest son made the first pitch, saying, he was thinking about that possibility. Others followed suit by saying the same thing. They just did not know how to bring it up. A series of relevant end-of-life concerns were brought up and each one talked about them freely, without fear of being misinterpreted or misjudged. They finally recognized the so-called “elephant in the room.” Everybody felt a sigh of relief and peace that they were able to finally had an honest and open conversation about care for their loved one at that final stage of life.

  1. Take time; Do not pretend you know a person’s wishes.

 Even though we feel we are a close-knit family, we should not presume that we know everything about each other. I have encountered several families composed of healthcare professionals who thought that they know what to do at the end of life because they have a background in medicine.  Unfortunately, they were at a loss on how to make decisions for their loved ones when emotion took a swipe at them.

Conversation on end of life requires a tremendous amount of time and listening. We don’t just sit down and say, ok we are here to document our loved one’s wishes. Advance care planning is not just about whether or not they prefer to be placed on life-sustaining treatments. It is not only about signing a CPR and DNR forms or designating a health care proxy.  Advance care planning does not only involve knowledge of medical procedures. It is a deep conversation about bringing the inner core of our values as individuals. It covers issues on relational and spiritual concerns. It should include how each person desires to live and spend the remaining time of life.

Listening is the key. It is best to first determine the patient’s goals and talk about them. Ask open-ended questions. Make some clarifications and offer what you can do to meet the set goals.

  1. Be sensitive to a person’s beliefs and values

End-of-life conversations can also intersect with cultural, ethnic, or religious beliefs. For example, some cultures have different interpretations of what it means to live according to the will of God. Some interpret it as doing everything to save a person’s life. Others believe that we should not interfere with the process of illness. They refuse any treatment. There are people who pray hard for miracles They mean that as giving God the chance to bring a person back to life. As a result, their loved ones are kept on life support all throughout even though it is medically clear that treatments are prolonging the dying process.

Be sensitive to a person’s beliefs. Sometimes, children come home bringing with them their newfound philosophy and belief after leaving their homes. They have the tendency to be imposing on their parents and loved ones.  You cannot go wrong to clarify once again the person’s wishes. We must remember that although we think we have knowledge of many things, the patient is still the expert on his/her own life.

  1. Explore areas where you can do something to make an end of life meaningful

At the point of our conversation, there may not be other medical recourse available for the patient. Doctors may have done their bests and exhausted all possible remedies to save the person’s life.  We must remember that even in dire circumstances, there is always something left to do on how to make the remaining part of a person’s life meaningful.  Explore those areas where we can still do something to ease the suffering of the person and the family.

  1. It is important to signify your wishes

A conversation on end-of-life care is not only for individuals who are diagnosed with a terminal illness. You might have recalled the story of Terri Schiavo in 2006. She had a cardiac arrest when she was only 27 and became comatose. She was in a persistent vegetative state for over 15 years and relied on tube feedings to live. Terri did not have an advance directive, nor an explicit expression of her wishes. As a result, her family was divided on whether she would be kept on a tube feeding. They intervened on her behalf by taking their opposing positions on how to handle her care in courtrooms. Terri’s case attracted media attention and has sparked a civil and religious debate on end-of-life care.

 

 

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