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This question usually comes in the form of a phone call from the one of the children of an elder I represent. This question is always followed by: “and if she’s dying, why won’t the doctors or nurses tell me?”
I struggle each time I hear those questions and this is why.
I believe that those who are caring for a loved one know that death is imminent long before the patient’s physician or nurses. In my experience, it is the family who informs the doctor or nursing staff that their loved one may have started the process of dying and needs a comfort care plan or hospice evaluation, not the other way around.
What are the signs that someone is actively dying?
They include but are not limited to:
- The patient voluntarily stops taking food and water/fluids.
- The patient sleeps more than they are awake.
- The patient is not lucid, or has a hard time focusing or seeing you when they are awake.
- The patient is weak overall, unable to walk or stand without help from someone else.
- The patient stops having urine output (they don’t need to go to the bathroom, or their diaper is dry for a day or more).
- In cancer patients, the patient may also run high fevers and/or have seizures.
- Some patients tell of seeing spirits of loved ones who have already died; they may even carry on conversations with people we cannot see while we are sitting with them.
Are you seeing any of these signs in your loved one?
Let’s consider some of the reasons doctors and nurses may not tell us that someone we love is dying.
1. The patient does not want to know they are dying and does not want their doctor to talk about it with their family.
Some people simply cannot emotionally handle talking about their own death with anyone – doctor, religious leader, family. When that happens, we have to take a step back and respect their decision, as difficult as it may be for those who love them.
The patient may refuse to sign the HIPAA release form (in America this is the release form for health information) to allow their physician to discuss their medical condition with family or friends. Unless the patient signs the HIPAA form, the doctor and nurses are not able to answer questions of family members or friends, that’s the law in America.
I have worked with clients who simply refuse to tell their children they are dying because they fear it will bring up painful conversations or start their kids fighting with each other. They just want peace at the end of their lives, so they slip away without ever having to talk about death with their loved ones. In the end, that is a person’s choice to make and we have to accept it, even if we do not understand it.
2. Sometimes medical professionals are punished when they tell a family that their loved one is dying.
A doctor I interviewed for this post told me of one of their worst experiences with being direct with a patient and their family about death. The doctor’s elderly patient was actively dying, there was nothing more to be done to prolong the patient’s life, and to try to do so would cause physical pain. The doctor met with the patient and the family to explain all of this, and offered to enroll the patient into hospice so they could be maintained comfortably at home until they died.
The children of the patient argued with the doctor. They demanded more treatment to keep their loved one alive. The children ended up firing the doctor and taking their loved one to the hospital. The patient spent the last few weeks of their life getting painful treatments that had no chance of working – all in an effort to appease their family.
The doctor said it was one of the worst experiences of their career and left them feeling sad and angry for their patient – who sat silent while their children screamed and yelled at the doctor.
We need to stop shooting the messenger! Doctors or nurses who are direct with patients and their families about death should not be punished for that honesty, not by the patient and certainly not by the family.
Maybe we need to make it safe for the doctors and nurses to openly discuss death with us?
3. Death is rarely predictable.
We also need to understand that death is rarely predictable, even when it appears imminent. I sat with a dear client of mine, Joan, through three different episodes when we thought she was dying and it was a matter of only hours before she was expected to die. Amazingly, Joan rallied twice and came roaring back into her life. The third time, she let go of life and died.
Sometimes death comes close and then the patient rallies and does well for a while. In those cases, we need to know that death can happen at any time and act accordingly. It also means we need education on when death is actually imminent so we are not confused and frightened.
In general, we need to educate ourselves on the signs and symptoms of what a body goes through when it is shutting down and dying either from advanced age or from disease. We used to know these signs because only 1 or 2 generations ago, we cared for dying family members or friends in our homes. We have lost that knowledge of the signs of death, so now we need to learn what death looks like.
4. Fear of death and loss.
Fear is an amazing and powerful emotion. We sense and feel fear in other human beings. We broadcast our own fear with our body language, our eyes, our voice, maybe even with our scent according to recent studies. If we fear death, then it stands to reason that those we love who are dying will sense our fear. The doctor and nurses caring for our loved one may also sense our fear and hesitate to answer a direct, or even indirect, question about whether our loved one is actively dying.
Or, maybe they have tried to tell you and you cannot accept or hear what they are saying?
Is your Mom dying?
In my experience, when I’m called with the question of whether a client is actively dying, the person on the other end of the phone already knows the answer to that question. They call me because I am someone who will listen, help them think about the situation, and point them toward their next step. That usually that means calling the physician for a hospice or palliative care evaluation.
If you want to ask the doctor or nurse whether your loved one is dying, please stop and think about the situation.
1. Go up to the top of this post and look at the list of signs that someone is dying.
2. Take out a piece of paper and write down all the reasons why you think your loved one is dying, for example weight loss, not eating, not drinking fluids, sleeping more than awake.
3. Then reach out to your parent’s doctor, the nurses or caregivers helping you, and/or your siblings or friends to see if they see the same changes in your parent – get a conversation going among those who are caring for this person.
Please understand that you may be bringing new information to your parent’s doctor or nurses, or to your own family members when you call about changes you are seeing. But remember, everyone needs that information in order to help support your loved one.
And then get brave, because the person you should ask this question of is the person you think is dying.
Ask your parent if they feel as if they are dying and talk with them about the changes you see in them physically.
If possible, ask them what they want to do about seeing a physician for an evaluation, ask them to tell you what they want to do if, in fact, they are dying.
Ask them where they want to be cared for at the end of their life.
Elders and people who have terminal illnesses have an incredible ability to sense when their own death is near and we should honor that intuition.
And I leave you where we started, to consider the following observation and see if it rings true for you.
I believe that those who are caring for a loved one know that death is imminent long before the patient’s physician or nurses. In my experience, it is the family who informs the doctor or nursing staff that their loved one may have started the process of active dying and needs a comfort care plan or hospice evaluation, not the other way around.
This post originally appeared on Paula’s blog On the Way to Dying.