“The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death… If only we had talked about it. And so, I never want to leave people I love with that uneasy and bewildered feeling about my own wishes. It’s time for us to talk.”

-Ellen Goodman, The Conversation Project                                                                                                                                                                                  

It’s usually uncomfortable to talk about our choices for end of life care. That’s why we put it off. Yet it’s unkind to leave a spouse, a child, or a loved one in a position of uncertainty about something so important. Open, honest family communication and quality-of-life go hand in hand.

When we embark on The Conversation with family and clinicians, it falls under the heading of Advance Care Planning or discussing one’s Goals of Care.

Denial Is Not a River in Egypt

In critical care settings, many patients and family members often lack the experience and confidence to make difficult decisions. For better or for worse, denial is frequently our default setting in situations of high anxiety and crisis. It’s a reasonable coping strategy, at least for a time.

During a traumatic event, we can be hard pressed to remember our own phone number, let alone to decide whether a loved one should be put on a ventilator or receive a feeding tube.

An antidote for denial is to look into the mirror with disarming honesty and emotional grit. Then to humbly accept the truth of our mortality and to talk about it with the appropriate people.

The best time to discuss our fears and wishes is sooner than later. The clear intent: to reflect on the care we’d prefer and to talk about it with the people who matter.

How Best To Talk With Our Doctors

How we view our clinicians determines how we talk with them and how we perceive their guidance.

Talking with doctors can be intimidating, given their vaulted status in our society and in the healthcare system.

An essential shift takes place when we learn to see our doctors as consultants rather than authority figures. That way, at important crossroads, we’re able to share in making decisions.

The good news is that most clinicians are becoming more patient and family centered. Ideally, important clinical conversations are taking place in a less hurried way, allowing for more transparency and rapport to develop.

Today’s clinicians are highly knowledgeable and tightly scheduled, yet beneath the white coat is another human being with a caring heart.

One key: listen well, and when it’s time to ask questions, be prepared and brave enough to get to the marrow. Hopefully your doctor(s) will follow suit. If need be, it’s okay to rephrase your concerns and to ask for  more time.

Ask For and Expect The Truth

The trajectories of most serious illness are familiar to our doctors and are quite predictable. By asking them for the truth, we will be better informed and better prepared.

A common barrier to effective planning: physicians don’t routinely initiate end-of-life conversations until late in the course of illness.  A doctor’s reluctance to broach difficult discussions may prevent them from happening at all.

A leading question: “Doctor, what’s the best case AND worst-case scenario here?”

One of the bravest questions: “Doctor, would you be surprised if I died in the next 12 months?” Then stop, watch, and listen…

By engaging our doctors in honest conversation, we can then consent to treatments that make sense to us. As mentioned above, late in the course of serious illness, many medical tests, treatments, and procedures provide little benefit. In some cases, they may even cause harm.

Here are five questions to ask your doctor before ANY test, treatment, or procedure:

• Why do I need this test or procedure?
• What are the risks? Will there be side effects?
• Are there simpler, safer options?
• What happens if I don’t do anything?
• How much does it cost?

Who Takes The Lead?

The most straightforward way to alleviate suffering at the end of life is to initiate a “goals of care” conversation with our doctor(s). It’s your body and your life!

Outside of the Palliative Care field, many physicians say they feel hesitant to initiate discussions about advanced or life-limiting illness. Let’s face it… It’s uncomfortable for most everyone.

Why? Clinicians fear undermining the patient’s hope as well as being subjected to a patient’s strong emotions.

In a large study of patients with metastatic lung and colon cancer, the first conversation about end-of-life care took place an average of 33 days before death. That’s five months after the option of Hospice Care could have been offered and considered.

“Please Speak Up For Me”

If we’re unconscious or have lost the capacity to make rational decisions, the medical team will turn to our Healthcare Agent or next of kin for guidance.

As an Agent, the best-case scenario would be to anticipate such an occasion and be prepared to speak for your loved one and clearly relay their preferences.

It’s a given that we can’t anticipate every twist and turn of a complicated illness. As agents we just do our best to ask good questions, and to collaborate with the medical team in making decisions in real time. We trust that we know our loved ones well enough, and then represent them as faithfully as we can.

With a deeper understanding established,  the clinical team and family can make mutual decisions about how to proceed in a way that shares control and honors the patient’s values. If this sounds to you like good Palliative Care practice, you’re right.

“Role Plays” To Further the Conversation

Between Patient and Clinician:

  “Be informed, prepared, polite and persistent.”  – Dr. Ira Byock

• (With Primary Care) “Nurse, when I see the doctor next, I’d like to have enough time to discuss my advance directive. Can you please make sure that happens? Thanks.”
• (With Primary Care or Specialist) “Doctor, I know that my illness makes it difficult to predict when complications might occur. However, could we please talk about what I might expect as my illness progresses? Both best case and worst-case scenarios?”
• (With Advanced Illness) “Doctor, given what we’ve discussed, would you be willing to help me complete a POLST document?”
• (With any topic that’s still unclear) “This is hard for me to get a handle on. Could you please go through that again? Thank you.”

Between Patient and Family:

Sometimes it can be difficult to get our family member(s) or Agent’s attention. Here are some prompts:

• “What if something serious, or even life threatening happens to me. Do you know what kind of care I’d want? And what I expect you to do? Please let me tell you… “
• If their reply is something like: “It upsets me when you talk that way.” A good response: “I know, it upsets me too. But it’s important to me.” If you’re still met with resistance, ask for a commitment to talk soon. Otherwise, consider that there may be a more appropriate Agent.
• When finishing up an important conversation, to ensure that everyone’s on the same page, consider asking for a recap such as: “We’ve gone over a lot. Let’s recap what we’ve agreed on.”

 Between Family and Clinician:

• “Doctor if this was your mother/father/spouse. What would you do?”
• “Doctor, given everything we know about our loved one, they would want …”
• “Doctor, could you please go over that again in simpler language? Thanks.”
• “Doctor, as a loving family, we feel it’s important to…”
• “We need a little more time to come to terms with everything that you’ve told us. Thank you.”
• When clinicians offer differing opinions, see if you can meet with them together. At the very least, tell each one that you’ve received varying opinions and would like help understanding the difference.

Next Week: Longevity Versus Quality of Life

 

A MEDICAL ADVICE DISCLAIMER

The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.

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‘Safe Journeys, until next week –

DSW