Never ‘do nothing’ at end of life

Providing end-of-life care – is one of the toughest, most painful things we are called upon to do. Who among us has not had the gut-wrenching experience of informing a spouse of 50+ years that within a few short days, their life together will come to an abrupt end? No more anniversaries. No more anything.

I don’t think physicians can truly appreciate what patients’ loved ones go through when they are dying, until we become that loved one. I got my revelation when I was the caregiver and hospice physician for a very close relative who ultimately died from cancer in my home. I had asked an oncologist friend of mine to take on her case when she relocated to live with me. To my surprise, my relative found my colleague to be rather cold and unfeeling, just when she needed a compassionate physician the most.

I deeply understand the field of medicine, had care provided by a clinician/friend, and my relative still had a subpar experience, so what must it like for those without a medical background?

I recently spoke with a friend whose elderly aunt had just passed away. In addition to the grief she felt, she had to deal with frustration and anguish about how her aunt was treated in her final days. Her aunt’s DNI (do not intubate) status was mistakenly assumed by some on her health care team to mean "DNT" (do not treat). Basic care, such as intravenous fluids in the face of inadequate oral intake, was even neglected. To add insult to injury, the family – those who actually knew her belief system, feelings, and wishes – was not allowed to partner with the health care team to create the plan for her end-of-life care.

While we often wrestle with how to talk to family, including what we should and should not say, perhaps we should begin by learning a little about the background of the family members so we can tailor our conversations to a level appropriate to their level of understanding – great or small– of health care.

We can learn a lot by talking to friends about the experiences they have when a loved one dies. How were they and their family member treated by physicians and how did they respond to that treatment? What do they wish had happened differently? What made the transition from this life more difficult and what made it easier?

My friend’s words of wisdom for hospitalists center on communication and respect: "Each patient and family should be treated as if they are Kennedys or Annenbergs from the start."

Dr. Hester is a hospitalist with Baltimore-Washington Medical Center who has a passion for empowering patients to partner in their health care. She is the creator of the Patient Whiz, a patient-engagement app for iOS.

Providing end-of-life care – is one of the toughest, most painful things we are called upon to do. Who among us has not had the gut-wrenching experience of informing a spouse of 50+ years that within a few short days, their life together will come to an abrupt end? No more anniversaries. No more anything.

I don’t think physicians can truly appreciate what patients’ loved ones go through when they are dying, until we become that loved one. I got my revelation when I was the caregiver and hospice physician for a very close relative who ultimately died from cancer in my home. I had asked an oncologist friend of mine to take on her case when she relocated to live with me. To my surprise, my relative found my colleague to be rather cold and unfeeling, just when she needed a compassionate physician the most.

I deeply understand the field of medicine, had care provided by a clinician/friend, and my relative still had a subpar experience, so what must it like for those without a medical background?

I recently spoke with a friend whose elderly aunt had just passed away. In addition to the grief she felt, she had to deal with frustration and anguish about how her aunt was treated in her final days. Her aunt’s DNI (do not intubate) status was mistakenly assumed by some on her health care team to mean "DNT" (do not treat). Basic care, such as intravenous fluids in the face of inadequate oral intake, was even neglected. To add insult to injury, the family – those who actually knew her belief system, feelings, and wishes – was not allowed to partner with the health care team to create the plan for her end-of-life care.

While we often wrestle with how to talk to family, including what we should and should not say, perhaps we should begin by learning a little about the background of the family members so we can tailor our conversations to a level appropriate to their level of understanding – great or small– of health care.

We can learn a lot by talking to friends about the experiences they have when a loved one dies. How were they and their family member treated by physicians and how did they respond to that treatment? What do they wish had happened differently? What made the transition from this life more difficult and what made it easier?

My friend’s words of wisdom for hospitalists center on communication and respect: "Each patient and family should be treated as if they are Kennedys or Annenbergs from the start."

Dr. Hester is a hospitalist with Baltimore-Washington Medical Center who has a passion for empowering patients to partner in their health care. She is the creator of the Patient Whiz, a patient-engagement app for iOS.

Providing end-of-life care – is one of the toughest, most painful things we are called upon to do. Who among us has not had the gut-wrenching experience of informing a spouse of 50+ years that within a few short days, their life together will come to an abrupt end? No more anniversaries. No more anything.

I don’t think physicians can truly appreciate what patients’ loved ones go through when they are dying, until we become that loved one. I got my revelation when I was the caregiver and hospice physician for a very close relative who ultimately died from cancer in my home. I had asked an oncologist friend of mine to take on her case when she relocated to live with me. To my surprise, my relative found my colleague to be rather cold and unfeeling, just when she needed a compassionate physician the most.

I deeply understand the field of medicine, had care provided by a clinician/friend, and my relative still had a subpar experience, so what must it like for those without a medical background?

I recently spoke with a friend whose elderly aunt had just passed away. In addition to the grief she felt, she had to deal with frustration and anguish about how her aunt was treated in her final days. Her aunt’s DNI (do not intubate) status was mistakenly assumed by some on her health care team to mean "DNT" (do not treat). Basic care, such as intravenous fluids in the face of inadequate oral intake, was even neglected. To add insult to injury, the family – those who actually knew her belief system, feelings, and wishes – was not allowed to partner with the health care team to create the plan for her end-of-life care.

While we often wrestle with how to talk to family, including what we should and should not say, perhaps we should begin by learning a little about the background of the family members so we can tailor our conversations to a level appropriate to their level of understanding – great or small– of health care.

We can learn a lot by talking to friends about the experiences they have when a loved one dies. How were they and their family member treated by physicians and how did they respond to that treatment? What do they wish had happened differently? What made the transition from this life more difficult and what made it easier?

My friend’s words of wisdom for hospitalists center on communication and respect: "Each patient and family should be treated as if they are Kennedys or Annenbergs from the start."

Dr. Hester is a hospitalist with Baltimore-Washington Medical Center who has a passion for empowering patients to partner in their health care. She is the creator of the Patient Whiz, a patient-engagement app for iOS.