Not all healthcare practitioners can partake in raw, authentic discussions about mortality with their patients. Couched with science and statistical analyses, their communication can feel vague or easily misunderstood, leaving interpretation up to a patient’s ability to understand confusing terminology, when fear and confusion dominate. Even practitioners sensitive to their patients’ emotional landscape are hindered by the 15 to 20-minute visits allowed by the medical business model of billing.
Daily I am asked a variation of these questions: How long do I have to live? Will I be stuck with this condition for the rest of my life?
These questions are packed with subtext. The unspoken questions revolve around mortality, quality of life, fear, loneliness, and pain.
If healthcare professionals answer the questions literally, they miss the emotional intimacy and connectedness the senior is asking for. These are questions they don’t take to their families for a variety of reasons:
- They don’t want to worry them.
- They don’t want their questions to burden their loved ones.
- Talking about mortality and dying is unknown territory and often taboo in our culture.
- Seniors may not be ready to discuss death and dying because there are no contextual communication practices for this type of talk.
In my experience, health practitioners use the words cancer and treatment, often leaving out the reality that some of these treatments are not curative. Patients do not ask, perhaps fearing the answers. Seniors have been conditioned to give their healthcare power completely to their physician, and not question their authority.
Last week I accompanied my client with cancer to his Oncologist, and he told the doctor when asked, that he did not want treatment. As if the doctor did not hear him, they went on to describe the treatment protocol, how long each therapy would take, the length of the visits, and how far apart the therapies would be spread. Skipping lightly and skillfully around any discussion of cure, and briskly shooting off a dizzying word salad of potential side effects, they barreled on as if he did not say “I do not want treatment.”
The quality of life one wants and the pain they are willing to endure often change when one is faced with a life-threatening illness. A person in good health might declare “I don’t want to live if I cannot take care of my personal needs” or “if I can no longer walk” when they are independent. You may find them changing their mind when they become more dependent and less mobile, “As long as I can visit with my grandchildren and talk with my kids, I want to live.” Without ongoing conversations, the family will not be aware of the bargaining their person is going through to b
uy a few more months or years, and how much they are willing to forfeit a quality lifestyle to extend their lifespan. The quality of life and what is tolerable becomes a moving target as someone moves through letting go of the life they once knew.
These conversations need to be addressed whenever there is a change of condition.
What You Can Do
- Close family members can offer ‘check-in’ discussions to take the temperature of their loved ones’ desire for living and tolerance for the lifestyle and quality of life they may be experiencing with the advanced disease process or the ravages of symptoms rendering them unable to live as they once did.
- Offer opening statements like: “Dad, I see you need your walker now to stay safe. How do you feel about that?” Or, “Mom, you now need your oxygen continuously. How does that make you feel?”
This allows your person to express their grief and feelings, and most importantly, it makes them feel less lonely in the journey of declining health.