She lays there… here eyes dancing between slightly open and closed… her breaths…much more pronounced now…it’s almost as if her whole body becomes a party to each deep inhale… her chest rises, but, so does her abdomen, but curiously not in harmony… her skin is sallow has taken on a waxy appearance…her cheeks are sunken…her lips…painfully dry but swallowing faded long ago.. her body is in the final act… she is actively dying… But, what do we do? Is she in pain? Can she hear? Is she scared?
This is where this becomes super personal for me… yes, I am a hospice nurse and hold the hand for many taking their last breaths But, the inspiration for this piece comes from the daughter… the daughter that had to make the agonizing decision to sign the DNR paperwork for my mom when her situation proved bleak.. the daughter who sat by her bedside for hours…watching her heart rate drop like droplets of water off of a winter’s icicle. Until finally, there were no more droplets to fall.. That daughter was me.
Yes, I was a nurse at the time. I knew what the lab values and readings meant. I could comprehend that my mom was dying in front of my own eyes, but, what could I do? For me, it was so much more about her. She had oxygenation issues and due to her illnesses. The nasal cannula was on, then when it was not enough, she had a bypap mask placed on. Even with that on, she had drifted in and out of lucidity. She mumbled words, she tried to open her eyes, but, since her body was failing she was unable to do so. I was so worried that she was scared. No one with absolute certainty can say what one sees or feels as they are dying. My greatest fear was that she was in fear or in pain. Now being a hospice nurse, I realize those are the worries of each person watching their loved ones pass.
“Ma’am, would like us to give her regular doses of Morphine and Ativan?” Of course I did and told them so. I was pulled to the side by an ill informed but well meaning friend of the family, “Routine Morphine and Ativan? Are you trying to kill her faster?” The question literally stopped me in my tracks. Kill her faster? No! How could anyone think that? Morphine is to help with her breathing and to help with any pain. But, if no one knows that and hasn’t been educated about it all they hear is Morphine: the big scary narcotic! It’s going to kill her sooner She’s going to die of an overdose! And, add Ativan – that’s that drug that makes people really tired and it’s for crazy people. Why is she giving both of them? The combination of the two with them – oh my Goodness that is going to just send her to her grave two minutes faster.
But, when I had to explain, through my tears and as my heart literally hurt that what I was doing seemed surreal. I was defending my decision. was that what I was doing was to make my mom feel comfortable and not to feel pain or anxiety during her final moments on this earth. The amount that is given of both is so small that it does not ever cause death but nor does it prolong suffering. People don’t understand that. In those moments those final moments I don’t know about you, but, I don’t want to be scared. I don’t want to be in pain. If it’s kind of like an hour glass and our lives are like those little grains of sand and it’s just kind of dripping out I’d much rather the sand it’s dripping out drip out in a smooth non-scary and non-painful fashion rather than abrupt and painful.
What happens to someone when they pass away is not completely known and understood. With medications and the support of those around them, the hope is that fear and anxiety is minimized. However, what is far more traumatic is to have to make the DNR decision in your own parent’s life. Did I make the right decisions? Could I have done differently?different but could we have done differently?
She wasn’t awake for most of that night. I held her hand and stroked her hair. Occasionally, there was a moan, a twitch and I would catch myself thinking that maybe I made the wrong decision. But, I could hear her saying that she never wanted any tubes down her throat. Funny, those words were easy for her to say but, as wishes needing to be upheld, they were harrowing.
With so many changes happening in those final moments, some happen so quickly we miss them, but, some scream out. My mom, unfortunately, got the rattle. That harrowing sound that sometimes lives in nightmares. As a nurse, I know that it’s not painful or distressing for the patient. It’s really simple, it’s just secretions that are trapped in the upper airway because the patient is too weak to be able to swallow them down. That’s all that it is. But, as a human being, that noise causes the hairs on neck to stand up. Try as I might, even today, when I am at a death, it still sends chills down my spine. But, I have to stop and take a minute and bring myself back to the place where I know that the patient is not in pain. Knowing what I know as a healthcare professional, I know that the only thing that truly works is turning in repositioning. Sure, there are medications that help just a tiny bit and we give them because in those last moments any little flicker of hope helps. But, that person is not in pain and not in distress. And as my mom was dying, I had to constantly remind myself of that. Because, staring into the face of the woman call what is the single most influential woman in my life, hearing that noise made me want to be out of my skin and everything and anything I could to try and stop it.
Those final moments of someone’s life, for which there are simply no words to describe the rainbow of emotions that come flooding forth. And it isn’t by the patient – It’s those holding vigil. At least for me, it was like what you see in the movies. It was like what you see in the movies. Life, in a series of frames, almost flashed in front of my eyes. Took my mom up about 12 hours to pass away. Those 12 hours were filled with laughter and tears anger frustration and sadness and bitterness and giggles. I thought about the time we scared my mom, who said she wasn’t scared of anything, with a furry fake mouse and she shrieked louder than our ears could handle. Or when she woke me up, sobbing, barely able to utter the words that her own mom had just died. And you know what? Those were all perfectly fine emotions to deal. There are no rules about the last moments of someone’s life. What you feel is your own. There is nothing that says that you can’t couple the seating pain of loss with the belly laughter of a memory that warms your heart. It’s your own experience.
At about 6 am, the doctor came in and asked if the bypap should come off. As it came off, my mom’s full face came into view. At that moment, I could tell she was already gone. The breaths she was taking were just reactions of her body. The paleness of her skin, the greatness of her lips – she was gone. I couldn’t help but continue to whisper into her ear because I couldn’t bear her being anything but peaceful.
The breaths stopped after a few short moments and she was officially gone.
My dear sweet patients…. I know how you and your families feel. I can laugh with your smiles and cry with your tears.
As I tell you when we first meet, this is a journey that we truly walk together.
From Saving to Sending 
I, too, am a hospice nurse, and felt like I was reading my story. I sat with my Mom and my Dad as they passed. I felt honored to be there during their last moments. When my Mom passed, I looked back at her body, knowing she was no longer there. I felt like her spirit got up and followed me. She has been with me ever since.
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I watched my mom, grandma and aunts care for my grandpa in 1992 at home, in rural Indiana. The doctor came out and showed them how to give Morphine IM injections. My grandma and aunts asked me, my mom and sister if our pastor could come out to visit my grandpa. Our pastor loved to fish, just as much as my grandpa. They shared fishing stories and our pastor asked my grandpa if he had heard about Jesus. Our pastor led my grandpa to Christ that day and my grandpa was beaming ear to ear.
Fast forward to 2001, my uncle Roy who was living in California and who was diagnosed with colon cancer at age 49, in 1997, came to live with my dad in a small town in Indiana. My dad had enrolled my uncle in health care that came to his house to help manage his symptoms. My dad was working full time and found that full time caregiving was hard to do and was buying a lot of frozen dinners for my uncle. I was visiting with my uncle one day and my dad asked me to fix my uncle one of those dinners. My dad had mentioned that my uncles appetite had not been good lately. I prepared one of the frozen dinners for my uncle but thought it looked bland in the container. I scooped it out onto a colorful plate and took to my uncle. He asked me what it was that I fixed as he ate ALL of the meal. Later that summer my uncle ended up in a nursing home as my dad’s FMLA had run out. That is when I found out that the health care my uncle was receiving at home was HOSPICE and they stayed with him when he transferred into the nursing home. My uncle died with my dad and me at his bedside, after a period of restlessness and the nurse and chaplain came for a visit, medication changes were made and the chaplain led my uncle to Christ that night after my uncle was so willingly wanted to know about Jesus. After being led to Christ that night, my uncle slipped into a deep coma like sleep with the “death rattle” and my uncle passed at 2:15 am that morning. The same nurse and chaplain came out to tend to me and my dad…that was when I found out what Hospice was. I was in my 2nd semester of Nursing school.
Since then, I have held the hands of many precious people who have passed away while under Hospice care as I became a Hospice Nurse in 2004. I have held the hands of the young (24 is my youngest patient) and from that experience, I know that I could not do Pediatric Hospice Care. I have held the hands of the very old (106 is the age of my 2 oldest patients) – I have held the hands of people with all different religious beliefs and some without religious beliefs. I have held the hands of people of various ethnic backgrounds and hands of many colors.
I have held the hands of my own parents as they laid in bed dying, knowing that there was nothing else left to do for them, except to hold their hand and whisper words of love to them.
I have laughed and cried with my patients and families. My heart has ached for them in their loss. I have shared their grief.
I have had hospice workers hold my hands and laugh and cry with me and share my grief, in my brokenness.
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Three years ago I lost my mom to ovarian cancer. I am an ER nurse so when patients die in the ER it is usually quick. I stayed at my mom’s bedside in her house for 4 days as she slowly slipped away. The morning she died the hospice nurse had come in (yes I needed help), we washed her, put on a clean nightgown and changed the sheets. She was unresponsive yet had stable vital signs. He heart rate was a little elevated so we decided to give her a small dose of oral ativan. The hospice nurse left to take care of another patient. The windows were open, there was a warm breeze. I opened the door so Mom could hear the birds singing and her wind chimes making music. I held her hand and she was gone 20 minutes later. I have struggled with that decision of giving her that dose of ativan. I have replayed the last year of her life hundreds of times in my head. I’ll never know if I did enough or if I fought hard enough for her. I just hope she is at peace, and I hope someday I will find peace with the decisions I made that day.
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You let her rest . I hold some question myself . My mom was at Stanford in California fighting lung cancer and then to find out a reaction to her treatment . It actually whited out her lungs .
I was a icu nurse at the time . I flew from Texas to California and stayed at her bedside for two weeks .
I refused intubation , assisted the pulmonologist place a chest tube .
But now as a hospice nurse didn’t insist that she be made totally comfortable. She was hypoxic and anxious . They wanted to place restraints I said no so we stayed at bedside and held her hands .
They gave her IM ketamine injections as the sedative . But she still was restless .
Days later , When we left her bedside for a meeting she left us . Now as a hospice nurse I suspect the med surge nurse gave her a little more to let her rest and peacefully transition.
I just wish I questioned earlier and insisted earlier to let her be more peaceful. To spare her the last days of terminal agitation.
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You didn’t know. You did your best. You loved her. You still do.
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