NOTE: This post is also available in audio by clicking the link above. The audio version of this post can be downloaded for listening on mobile devices.
This question usually comes in the form of a phone call from 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.
Paula,
Excellent article and right on the button in my experience.
My Mom never had a problem eating or eliminating but she did sleep a lot.
As I told you I knew she was dying; it was in her eyes.
She knew it too but we never discussed with each other directly.
She started referring to me in the past tense and she did tell me she hoped God wasn’t mad at her because she felt she had let some people down in her life.
Saying goodbye is hard when you love someone.
Debbie, thanks for taking the time to read this post and leave a comment about your own experience – I know it is so hard to reflect back on the death process of a loved one. I do think we know at the time that death is near and it is so painful and difficult to have direct conversations at that time – because, as you so directly stated – it is one of the hardest things we do as human beings – saying goodbye to those we love. Take care.
I really needed to read this. It hit home tonight. I know my mother is dying and I know she feels it too. She is letting me know everything she is feeling so I’m aware. We talked about meeting again and her going to be with her mom and dad and my daughters, but the look on her face when she is in pain is awful.
my mother has been coughing for weeks now, we’ve seen a doctor and they say that it’ll go right over in a day, that was 1 week ago. Is my mother dying?
Hi Hannah, I can’t give you a medical opinion of course, but I can encourage you to seek care for you Mom – if you feel she’s not being given the testing and treatment she needs, then get her to another provider, or even an emergency room. Listen to your instincts, there is no harm in getting another opinion from a different doctor. Best wishes to you all –
My mother is talking to people who aren’t frilly their she’s not taking fluids she can not walk by herself I’ve been taking.care of her for 2 years she resntly started about 2 weeks ago. What do I do w she passes
Christopher, please call your mother’s doctor and ask the doctor’s help. The doctor may want to have you bring her in for a visit. Your mother could have the flu or be dehydrated and need fluids and medications. If she does not have a doctor, please get her to an urgent care or emergency room in your area for help. The doctor/emergency room physician can get you the support services you need, whether that’s home health, medicines, or hospice level care. But please seek care immediately for your mother and tell the medical professionals about your need for help in caring for her. I wish you both well.
I believe my mother is at the end of her life. She is suffering from stage 4 metastatic colon cancer. On October 3, 2015, she underwent emergency surgery. She was not expected to survive. She bounced back. On December 3, 2015, she was hospitalized due to sepsis. Doctors believed she had at most two days. Incredibly she survived. She is about to be released from the hospital. At this point, I am feeling extremely sensitive about her passing in my house. I cannot control my fears. I have been reading to try easy my pain and fears, to no avail.
Any advice?
Anticipated thanks
Providencia
Hello Providencia, I can well understand your concerns about taking your Mom into your home when she has been so ill and in pain. I suggest you talk with the doctor or social worker at the hospital as soon as possible about discharging/releasing your Mom under hospice care to either a dedicated hospice facility or a nursing home where hospice care can be provided. If you can arrange for her to go to one of those facilities, then you can be with her when you can and be assured that she is getting the physical support and pain medication she needs. There should be someone at the hospital who can help you with those arrangements. I hope this is helpful information for you. You might also read my blog post on What is Hospice? How do I get it? You can contact me at pjmccann60@gmail.com if you need further advice.
My mom is at the end of her fight with stage IV colon cancer too. Not to bring up the past. I see this was nearly three years ago.
My mom is 87 with tons of comorbidities. She has had countless emergency visits, hospital stays & rehabilitation admits in patient & out patient due to falls, exacerbation of respiratory issues, fluid & electrolyte imbalances, cardiac issues & urinary tract infections for the last 15 years that I’ve been caring for her. In addion to her anxiety and depressesion her eating pattern, sleeping pattern, bodily function & physical mobility partterns go from one end of the spectrum to the other. The doctors have told me on many occasions to get a plan. Hell, they don’t even know!!! This woman (a Saint I must say) is overwhelmed with the fear of dying. When I look at all that she has endured I envy the fight yet I hate the struggle. I am the only one of her 8 children that does anything and everything for her. She was physically, mentally & sexually abused by my father. I feel the only reason she is still living is the fact that her fear of dying is greater than the will to give up. You can read anything about signs of death all you want but the reality is even if all the odds are stacked againts you your mind is a powerful thing and can trick even the most knowledgeable medical professionals. I can’t believe what I’m living, seeing & breathing in caring for her. There has only been one other person in my lifetime i was associated with while i was working at a nursing home who lived long past the medical professionals opinions. Why? Because she was afraid of dying according to her daughter who was a nurse.This woman who had had a stroke was not expected to live. Yet, she could not speak, eat or function. She laid in a hospital bed for 8 years before she went to the pearly gates. I just couldn’t believe it but now, I see first hand how fear is the real gate keeper. Maybe all death amd dying experts could include the fact that fear plays a huge factor In the dying process.
I totally agree with you, Maryanne! Fear of anything is a huge factor that has a real impact on the body. Fear of death is something that needs to be considered when helping anyone who is dying. The ability to be truthful with oneself about fear and communicating those fears to others is the first challenge I see in many of my clients. I have had people fear death because they believe they were “bad” during their lifetime and will be punished in the afterlife. I’ve had clients fear death because they have issues left unresolved, or things undone. Whatever the reason, in my experience, it takes a patient being willing to acknowledge that they hold that fear before anyone can help them with it. And sometimes it takes a neutral, professional outsider (counselor, religious person, social worker, hospice provider) to help them give a voice to their fear, as parents and spouses usually do not want to admit that weakness to those they love. Thank you for so eloquently describing this issue for everyone to consider, your comments are truly appreciated.
Life is uncertain and so is dying. Predictions are just predictions.
My mother has been dying for 17 years now…but this is the first time I am seeing the fear and not wanting to be left alone for 1 minute…everyone except for family is the devil trying to get her or a family member. Nothing is ever good, when I finally calm her down she does ok for about 6 hours or less and it starts all over again. My other sisters help out a weekend here and there, So I am defiantly getting over whelmed… To get help is in possible. I love her so much and always made sure she was included in my life. I will miss if it does every happen…but I feel its near…. I just don’t want her to be scared…not a good way to leave this earth. Not sure where I am going with all this, guess I just needed to vent…..
Hi Cindy, you are totally allowed to vent given the demands placed on you to be the primary source of care for your Mom. I suggest that you explore hospice and what it could mean for your Mom and you regarding help in the home, and medications that might ease your mother’s mind. If she/or you belong to a church, there may be support there you could ask for thru the leader of that community. But please check out hospice, they provide not only medical support but also grief counseling, counseling leading up to death for the patient and the family. And if you have time, please let me know via comment whether hospice could be of help to you. See also the post on this blog:
My Mom is 81. Has Parkinson’s, back and knee pain and had a stroke followed by 3 subdural hematoma 2 years ago. Came back from those but is currently not eating or drinking much and sleeping 20 hours a day for past 3 weeks. Has now become incontinent. 4 falls in last 5 weeks. Have taken her to emergency, Neurology and her geriatric Dr. They fond nothing. Sounds like active dying but she has always used illness to get attention. How do I know the difference?
Hi Molly, I thought I had responded to you, if not, I’m sorry for the delay. She needs to be evaluated by her primary care doctor for “palliative” or “hospice” care options. It does sound like she is progressing in her decline, especially due to incontinence as new symptom of decline. The primary treating physician should be able to do a holistic assessment and offer options for keeping her safe and comfortable. Please remember to take care of yourself in all this – get rest, see friends, breathe.
My mother died in April of 2016,a week after finding out her breast cancer had returned.She was sick for months but her doctor did not order blood tests until we asked about it.By the time the results came,she was already gone.
Four days before she died I remember walking into her room and her sitting up in bed,talking but sounding like maybe the morphine was to much., but I knew right away that she was going to die soon and cried when the student nurse consoled me but was not convinced of it like I was.
I’m a nursing assistant so I have some minor knowledge of the death process,but nothing much really.When her stats started dropping,even her doctor said “this is happening to quickly”!.But I knew.I knew when my best friend was about to leave me:(.I miss her dearly.
Hi Kristin, thank you for sharing your experience of your Mom’s death with us. Sometimes it happens so fast, we just are not ready. What strikes me when I read your comment was that your Mom knew you were there with her in her last days, and sometimes that is all we can do or be for someone we love. Take good care of yourself.
hi I am currently experiencing this with my mother, she is.. I think in the active stages of death, she sleeps a lot, she want eat, she talks about she has had a baby, she has lost a lot of weight, I can see it in her eyes that it want be long before she transition, im scared, angry, mad, etc, im experiencing mixed emotions, Im upset with my sister, she does not have a job and yet does not support me or the situation, I work full time and still be there for my mother until the bitter end, my sister and her daughter has taken furniture and personal things out of her house and she is not even dead yet. I am her power of attorney, I am so overwhelmed with it all….
Hi Sabrina, I’m so sorry you are alone or isolated trying to deal with all of this. I can understand how disrespectful your sister’s behavior feels to you right now. If you have not engaged hospice care for your Mom, please look at doing so. I think that would give YOU the medical and emotional support you need. As Agent under the POA for your Mom, you can demand your sister return the furniture. Or keep a list of everything she takes and talk with a lawyer after your Mom dies to see what your state/estate process can offer to equalize your share of the estate. But for right now, please get hospice support for yourself and your Mom. And know that after her death, hospice will provide support group/grief group therapy to you for free and I encourage you to explore that option. I’m glad you found this site and I hope the information here helps in some way. Take good care!
Hey, first of all thank you for the post. My mother has Parkinson’s desease and I am currently abroad. My biggest fear is, if something happens, I won’t make it in time to talk to her one last time. She has been really sick for about a week, she has bearly eaten a thing and has had fever. I don’t want to freak out just yet, but she fell over and was unable to stand up, she waited for my father to come back home and help her up. She has a very hard time breathing, and she wants to clean up the house, I think it’s a sign that she might not want people to come see her and find her in an untidy space. Of late, she frequently speaks about the “great winter” that’s about to come, and i don’t think she means it in a literal way. I trully don’t want to lose her just yet, I’m only 22 and I love her more than anything in the world. Honestly, I know it would be a relief for her in a way to stop feeling all the pain and the illness. I just would like to know what would be the best way to deal with my anxiety about this and stop feeling this guilt and helplessness.Thank you very much!
Hello Stefania, I’m sorry for my delay in responding to your comment. One way to deal with your anxiety about your Mom and Dad in your absence is to see if you can Skype, Google Chat, or Facetime with them each day, even if only for a few minutes – so you can see your parents and they can see you. I’ve done international Skype and Google Chat and it works quite well. You have to know that your Mom supports your travel and would not want you to put off opportunities in your own life because of fear for her condition. Seeing them, talking with them one time or more each day to check in would help you with your guilt/helplessness and anxiety. Or even instant messaging via Facebook can help you feel connected. So think about creating that “touchstone” during your travels (where you see them, hear them, connect with them each day). Take good care of yourself in all of this too – get rest, exercise, eat well, ask your friends for hugs – touch helps calm us down.
My mom went to the hospital a month ago because my brother found her barely alive on the sofa. She went in with pneumonia and sepsis. She has been suffering from congestive heart failure for years. She also has stage 3 kidney disease, diabetes, and now I was just diagnosed with bone marrow cancer. She needs often blood transfusions in order to keep her numbers up. She suddenly gained a lot of water weight the last couple of weeks and she looks puffy and bloated everywhere. She is unable to sleep without a bipap because she could die without it. She almost Died twice since she has been in the hospital and was transferred to ICU then to the third floor .. To the second floor back to ICU and now she has been on the third floor which is more intense care than the second floor. I am terrified of her leaving the hospital Because I know what will happen. I will lose my mom forever. What usually happens when a patient declines like this? If she goes home she will die. Is there some other option? The doctors are not really telling us anything they act as if they don’t know anything same with the nurses. What can I do and who can I ask? She already gave them permission to give me info in regards to her health. Is there a HIPAA form I need to sign? I will figure this out regardless I just want to know if anyone has dealt with this and I’m trying to figure out how much more time I have with my mom so I can set aside time to spend everyday with her before I lose her.
Hi Elizabeth, I’m glad you left this comment and I hope my response and the responses of others can be of help to you.
First, I think you need to have a talk with your Mom if that’s possible (if she’s aware and can respond). Does she want to continue to take her blood transfusions, does she want to continue to receive medical treatments or does she want to just be made comfortable while her body shuts down? This may not be what you want to hear, but from what you have described, it sounds like she has multiple major issues, primarily congestive heart failure for several years. I suggest you and your brother, and any other siblings you have, meet with the doctor who is in charge of your Mom’s care and ask for someone from Palliative Care to be in the meeting as well. If your sibs live away, Skype or Facetime or conference call them into the meeting. Ask about what they are thinking in terms of keeping your mother comfortable and express your Mom’s wishes to the medical professionals. Ask if she should be transferred to a hospice facility (if there is one in your area)? Make it clear whether or not you all feel you could manage her issues at home. It sounds like that would not be safe for her or possible for you all even with a supportive visiting nurse or hospice care. Ask the palliative care professional for a realistic time frame given your Mom’s issues. Ask what the prognosis would be if she declined further blood transfusions. Given the water weight gain, ask if she is experiencing kidney/renal failure. But again, start by asking your Mom what she wants if she can express herself right now. Find out if there’s an Advance Medical Directive or Health Care Power of Attorney that may give you guidance and may name an agent to make these decisions for her if she can’t make them for herself. The hospital also has social workers, palliative care nurses, and chaplains of all faiths usually on call for you and your sibs to talk with as a group and individually. The main thing is to keep everyone focused on Mom and her needs. I know it’s hard to let go but, believe me, it’s much harder to watch your parent suffering. Take care of yourself in this process, make sure you eat, get sleep, get breaks away from the hospital to think and get support from family and friends. Paula
Thank you Paula
My mom was in the hospice home, but no one called us when she took a turn for the worse – and the family member present did not call us either. It’s hard when someone has dementia to tell when the time is near. My mom had gotten where she was having trouble talking so very hard to know about pain levels, whether she felt that she was dying.
In my case, it was how the doctors told me. They misled me and kept lying about her symptoms when I noticed the opposite of what was being told. Had I known certain things, I would have quit my job and spent those last days by her side. The worst feeling is having a brand new MD tell you your mother has weeks to a day left to live in 12 hours. I could tell when they stopped caring.
UPDATE ON MOM:
Yeah similar situation she was going to die regardless..there mistake was not telling us until days before she did. I was able to get her home on hospice. She passed 3 days after the “comfort care” started. She recieved her wings the day after Christmas. Man I miss her 🙁
Their *
My mom is in hospic care. We have not touched her, hug her and kiss in over 6 months due to the virus. We can not see if there are changes because we are not allow to see her. We can only have window visits but the windows are dark. Before she went in she talked normally and new all of us kids. Now she is in her own world. We call and they tell us she is sleeping alot. She does not know us kids and she is always talking to dead people and saying she is some where other than her room. The hospic nurse tells us she is still eating, going to the bathroom. To me just hearing what everyone is saying she must be missing mealings and she can no longer feed her self. So are these signs of coming to activity dying. Please help me because it seems like they just tell us the same thing.
Hello Sandra, I can’t imagine how hard this is for you. Hospice care workers will tell you when there are changes. You could ask if they could Facetime or Skype from one of their phones so you can see your Mom and she can hear your voice. Active dying usually means the patient has stopped taking food/liquids and their bodies are shutting down (no more urine because the kidneys have shut down). The dying process can take a longer time for some. With dementia, it’s very hard to know when someone is in pain or discomfort. You could ask about what medications if any, your Mom is getting at this time. Ask what food or liquids she is getting. She may be getting protein drinks and hydration drinks to make her comfortable. Ask how much she is actually taking in for fluids each day. And ask for a family call with the head nurse for her unit so that you can ask your questions and get answers as a family if that’s possible. Please remember to take care of you in this process, to get sleep, exercise, meditation, or prayer. Death can be a long journey.
I hope these comments help.
Hello, and thank you for this article.
My mother is 78, has cirrhosis of the liver (alcoholic), ascites, hemochromatosis, bladder cancer… the list goes on. She was in the hospital the first week of February which was when she was diagnosed with cirrhosis. She saw several doctors while she was there as well as after she was released. Not one has given her even a hint of how much time she might have left. A year? A few weeks? A couple of months? I don’t think they have even told her outright that she is dying but she knows and we’ve had a couple of very short conversations about it. She sleeps 14-16 hours a day, vomits several times a week, never feels “good” anymore. Just different levels of “bad”.
I would like to at least have an idea of where we are but I think she is afraid to ask. I’m aware that is HER decision but I have medical power of attorney so could they talk with me about it without her? I am working 4-5 days a week now but if I knew it was a matter of a few weeks or a couple of months I could take time off to be with her as much as possible. I don’t want her to be alone.
I’m so sorry, Leigh. I know this situation must be very difficult. You can ask that your mother be enrolled in hospice care, which is covered by Medicare and Medicaid. If the dr believes she has 6 months or less, they will write an order and you pick a hospice provider. The hospice staff is very good at letting you and your mom know what they expect in terms of what she is facing for pain, especially, and potential life span. You both will have access to grief counseling during this time. The most important issue is that hospice nurses will make sure your mom is as comfortable as possible in terms of pain management while remaining as lucid as possible so she has quality time with family and friends. I hope you’ll look into that option with her primary care or treating physician. Usually you have to ask for a hospice order, drs are not always proactive in offering hospice care.
Best wishes to you –
Paula