Grand Rapids Press Article

End of Life Decisions First Responder

In my role as an educator and hospice volunteer, I have had the privilege of working with over hundreds of patients and volunteers.  On a parallel path, I have discovered something I had not anticipated.  I have become known as the person who is the “expert” on death and dying in my circle of family and friends.  I frequently receive phone calls wanting to know what to do because their loved one had recently been told by their doctor that there was nothing more to be done from the standpoint of cure.

It is like buying a new car.  How often do we “pump” friends who own cars that we are considering, for information before we make the actual trip to the car dealer?  Considering end of life decisions is no different.  We need to get the “lay of the land” from others that are known to us, before making the call to an “unknown” health agency like hospice.  The overwhelming fear of death in our society often inhibits a person who is terminally ill from starting a conversation about death, even though inside they desperately want to.  Hopefully they have had the opportunity to talk with a social worker, but sometimes that is not the case.  So the fallback is for someone else – and it might just be you - to initiate that conversation.  It will even be more likely if you have had a hospice experience in your family and you are now seen as the “expert.”  Another potential first responder is someone involved in home health care.

Most of us would be happy to start the ball rolling, but just need a few guidelines to assist us.  Death occupies that unique niche of experiences in life we only do once.  So over the years, I have developed a check list of what to cover in a conversation regarding end of life decisions with a patient and family.  Believe me you want to have that conversation!  Not doing so often puts our friends and family members in a situation that they never would have wanted to be in; because the default is to have everything done medically to keep one alive.  The vast majority of people I have dealt with do not want that option. However, it takes some conversations and planning to achieve that.  With that in mind, here are some points to cover as you take stock of the situation in your role as end of life first responder.

• Acceptance of death – How does the patient’s reality match up against what the physician is saying?  After the preliminaries, my opening is always, “I understand things have changed and the doctors have said that cure is no longer an option.  Is that your understanding” That sends the message that it is ok to mention death and heaven forbid even bring it up in a conversation.  (Keep in mind that this is often for the very first time.)  If the answer is in the affirmative, than it is easy to proceed.  If denial of the situation exists, it may not be time yet. 
• Denial can be further explored with statements like, This is what I am seeing, (hearing, feeling.)  How does that compare to what you are experiencing?
• My next question is, “If your time is limited, how would you like to spend your remaining days?”  For my dad that opened the door immediately.  He emphatically told me that he did not want to be in a nursing home, or in a hospital.  He wanted to be at home.  That was huge, because he clearly communicated what he wanted.  He just needed someone to ask him.
• This is a perfect lead in to: “In order for your family to do everything in their power to make that happen we need to have a plan because I know you might feel pretty good right now, but when people are terminally ill, things change in a hurry and without a plan one is just reacting when that happens. You may not end up getting what you want.  Together we can make that plan.  Would you like to explore that”
• “Part of that plan involves hospice care which can help you stay at home. in order for your family to do everything in their power to make that happen  I am curious, what is your concept of hospice.”  Having them talk about their concept, rather than me explaining it right away provides me with the opportunity to find out what their misconceptions are. There are often many if they had not had a previous experience with other family members.  If I don’t have the answer, I will get it.
• Do they have an advanced directive or have named a patient advocate?  If not, time in the near future needs to be spent in that area.
• Is the family on the same page?  It is not uncommon to have two camps – one to let the patient die naturally, the other to do everything possible to keep the patient alive.  A simple “Help me to understand your thoughts on this” allows others to articulate their reasons and more importantly their feelings.  Once again misconceptions are able to be discussed.
• Finding out the group dynamics is helpful because it is going to take all involved to work as a team.  Is the patient a take charge planning type of person or a procrastinator?  Are they open to talking about themselves and express their needs or are they more reserved?  Who is the go to person in the family that gets things done?  All this is helpful to know as the plot unfolds.

Once that inventory is taken, everyone has had a chance to talk and ask questions.  The wishes of the patient are laid out in the open and reality of approaching death has been brought into the conversation.  The end result is that meeting with hospice is not so intimidating and they can go into it with knowledge and a list of questions.

Take a look at the inventory questions.  One does not have to have extensive hospice experience to initiate a conversation like this.   Anyone can do it with the attitude of listening and non judgment.  Obviously my goal is to encourage hospice care and die a natural, peaceful death.  But I have had others who have wanted to keep fighting to the end.  If that is what they want, I will always support that. At least they have had a chance to think and talk about it and are not blindly following a path they think society wants them to follow.  For perhaps the first time, they know there are options.

Talking about death is an unknown experience for many.  The reaction to this is fear and avoidance. Before turning down your potential award winning role of first responder, think of all the unknowns you have faced in your life – almost everything.  How did they come out?  I bet you more positives than negatives.  You can do it.  I say this because of you already have done similar things – many, many times.  Having a conversation on those options provides a certain peace of mind for them and for you; knowing that you were able to help guide them to that point.  Wouldn’t you want someone to have that conversation with you?