Q: Who Will Speak for Me When I Lose My Voice? (Or My Mind?)

A: Your Healthcare Agent

 

AT SOME POINT DURING ADVANCED ILLNESS, eight out of ten of us will not be physically or mentally able to make decisions about our care.

This is when the Attending Physician will turn to our Healthcare Agent or next of kin, and ask, “What should we do?” This can be one of the most challenging questions life ever presents.

For those who have had “The Conversation” regarding their wishes, the answer is often clear. For those who haven’t chosen an Agent or gone into enough detail regarding what’s important to them, this can be a harrowing time.

If we haven’t selected a Healthcare Agent and legally empowered them, then the decision falls to our next of kin. In descending order, that’s a married spouse, an adult child, then an adult sibling.

In the absence of a spokesperson, or more often the case, if our loved ones can’t agree on a course of action, our doctors are obliged to provide care. The default is almost always to prolong life, by all means, for as long as possible.

While we have the capacity, we each have the right and the responsibility to determine ahead of time or in ‘real time’ what degree of aggressive treatment and/or life support we would want and for how long.

When we hesitate to accept this responsibility and instead defer to family or institution, we risk “runaway” treatment that may not be in keeping with our wishes.

Two Essential Tasks to Ease Fear and Suffering

After realizing the importance of a Healthcare Agent, comes the task of recruiting one.

After selecting an agent, the next step is to have a series of conversations to explore, and document what matters most to us, in regard to our goals of care.

This process is fondly known as having The Conversation. But where to start?

The best practice: Here and now. Around the kitchen table is ideal.

How to Get Started

The best time to discuss our fears and wishes is sooner than later. “Let’s wait and see” is not a winning strategy. Please don’t wait until a crisis arises.

The hospital is perhaps the least desirable place to have such a conversation. The institution hums with urgency, distress, and the overarching bias of providing additional treatment.

Under this gravitational field, it’s extremely difficult to discriminate and choose between various medical options, let alone to opt out.

While it’s hard to talk about one’s death, it’s unkind to leave a spouse, a child, or a loved one in a position of uncertainty about something so important.

Too many people die in a way they would never want, simply because they didn’t talk about what they would want, with the right person.

The survivors’ guilt that can result from not knowing and then questioning whether we made the right decisions is a cruel inheritance.

Begin sooner than later to identify and to coach this key person. Your agent may initially feel hesitant to assume responsibility for such important decisions.

While this is normal, it needs to be addressed and redirected. In truth, your Agent is being empowered by you to communicate your wishes.

It is of lasting importance to reaffirm that the patient is the decision maker. The Agent is a spokesperson.

Note Well: If you can talk and have “capacity,” your choices can be updated at any point and communicated to your doctors. Your Agent and your Advance Directive will hold sway only if you lose the capacity to communicate clearly.

If your Goals of Care should change, your Advance Directive can be updated simply by having a new one signed, witnessed, and distributed.

Family Dynamics Are Likely to Come into Play

If you or a loved one lacks capacity or can’t speak, even during an operation, your Agent or family member(s) must assume significant responsibility.

The underlying and long-established patterns in a family’s decision-making process (“family dynamics”) can either be of support or harmful.

A sole family member’s unwillingness to accept a life-limiting prognosis can influence the patient’s and clinical team’s decision-making and lead to prolonged and undue suffering.

Some of the most traumatic suffering I’ve witnessed, for patient, family, and clinicians alike, is when family can’t (or won’t) agree on when to remove life support from a patient who will not survive without it.

An honest assessment of our family’s emotional patterns allows us to plan accordingly — the earlier in the disease process the better. If need be, we can even single out and exclude a particular person’s involvement through our Advance Directive.

Criteria for Choosing an Ideal Healthcare Agent

An ideal Agent is someone who:

• We can trust to carry out our wishes
• Can shoulder the responsibility to speak for us in emotionally charged situations
• Lives close by or can travel to be at our side
• Knows us well and understands what’s important to us
• Will listen well and ask good questions
• Will likely be available long into the future
• Would be able to handle conflicting opinions between family, friends, and medical personnel
• Would be a strong advocate in the face of an unresponsive doctor or institution
• Knows how to and when to let go
• Note well: these suggestions may lead to choosing a person other than a spouse, son, or daughter, if a more suitable Agent is available.

Note well:  In most cases, if we’re unable to speak for ourselves, our Agent has the right to update or change our Advance Directive as they see fit. Choosing an Agent who we trust to understand and carry out our wishes is of paramount importance.

The bottom line: The clinical team is duty bound, whenever possible to give the family time to resolve their differences, despite the likelihood of  moral distress for all concerned.  Choose wisely…

What Next?

If you have a Healthcare Agent, please have a more detailed conversation with them given what you’re learning. If nothing else, thank them for their willingness.

No Agent yet? I encourage you to talk with a trusted friend or family member to explore possibilities. You can also talk with your Primary Care Doctor for guidance.

As a last resort, there are agencies, which for a reasonable fee will serve in this capacity. Google: “Find a legal guardian.”

Next Week: Advance Care Planning & The Advance Directive

Feel free to leave a comment on the “Contact” page, and let me know what’s on your mind and what you’d like to hear more about. If you’d like to forward this Post to family or friends, just use one of the blue links below.

‘Safe Journeys, until next week –

DSW