Tag: imminent death

My Mother’s Last Three Days

Easily the most read and commented upon post on this blog is one that I wrote after my father’s death, How to Know When Death is Imminent, Signs Someone is Dying.

My mother died six weeks ago on July 9, 2015. I called my father’s death “hard work.” It was the first for which I had kept vigil, and now I know his was an easy one, at least for me. He suffered from Parkinson’s, dementia, and Alzheimer’s and had been in and out of consciousness for days prior to his death. He couldn’t talk, so I did not know if he was in pai or scared. He rallied to smile once, although I could tell from his eyes he was aware that people were with him.

My mother only lost consciousness at the very end, helped along, I think, by generous doses of morphine.

She had been totally bedridden for 18 months, and full assist (had to be fed) for the last six or so.

But she never became demented.

My mother was disabled by rheumatoid arthritis, and weakened and finally defeated by kidney failure. The last year of her life she was assaulted by edema. Using diuretics compromised her kidney function. Not using diuretics meant her arms especially would look like half-full water balloons, and every time she would be touched, she was in pain. Even the seam allowances on the insides of her sleeves tormented her. This is what we could see. Edema also puts a strain on the heart.

Through careful monitoring, the doctor was adding the diuretics as needed, then pulling back when the kidney function numbers started looking alarming; then repeat and repeat.

My mom had a decent quality of life, primarily because of the graciousness and professionalism of the staff of Pisgah Manor Nursing Home, who I will never be able to praise highly enough. My mom loved her meals, and she raved about the food. I’d leave Pigsah Manor hungry when I’d come to feed her. Let’s stop and consider that: Have you ever heard any visitors say they left a nursing home hungry? And my mom loved to bird watch. We had several feeders going outside her window, and I have never spent so much time bird-watching. This spring and summer brought so many goldfinches.

Then at the end of June, I had a call that my mom was hallucinating horrifying scenarios, like her blankets were on fire and George W. Bush’s dog was bleeding out on her bed (really). The nursing home suspected a urinary tract infection, and the specimen confirmed this; within a few days she seemed much better, but for the first time wasn’t eating every morsel on her plate. I heard a strange sound from her lungs, like a cat mewling.

Monday, July 6, I went out to the home; they were about to call me anyway. My mother had a gurgling sound in her lungs now, but no other cold, flu, or virus symptoms. She obviously did not feel well; she had no appetite and would only drink with persuasion.

When her morning CNA left, she reported that my mom had produced no urine. I knew we were likely in trouble then; I had learned that when my dad died.

That night, I made calls to those I needed to. There was a contingent who thought I should have her transferred to the hospital. They were certain that once there, she’d get some medication that would fix her up just fine. I decided, since she was fully cognizant, to ask her what she wanted to do.

Tuesday a catheter was inserted. After her bladder was drained, it was obvious she was simply not making urine. I told my mother she was very sick, and asked if she wanted to go to the hospital. She declared she would fight this problem at the nursing home among people who cared for her.

The next two days, my mom was frightened and in pain. She said over and over and over again: “I can’t breathe.” And over and over I would tell her that yes she could breathe, if she could not, she couldn’t talk. She had supplementary oxygen; we would tell her to breathe through her nose calmly and slowly and out through her mouth. It didn’t work.

“I can’t breathe.”

She sounded like — and likely felt like — she was drowning. Edema had spread to her lungs.

Still no urine: we were coming to the end. The nurses did not hide this from me. Always there is the caveat that no one knows for sure, people will surprise you and so on, but there was no reason to believe this would be one of those times.

I was encouraged to go home and rest. Wednesday morning when I walked in I immediately noticed two changes. My mom was ashen, especially on her upper lip area, chin, and the region of the face around her mouth.

I am not trying to be poetic when I use “ashen.” It is used for a reason. The color is much the same as ash.

I’m also not trying to be poetic when I say that the light had gone out of her eyes. This is hard to explain, but there was a haziness or dimness. Perhaps only someone who knew my mother before would have seen the difference. She was, however, still fully conscious, and still panicking and saying “I can’t breathe” and “Help me.”

I asked her again about going to the hospital, and she refused. I told her she was very, very sick.

She asked if she might die. I said yes. When? No one knew.

She seemed genuinely surprised by this. Here she was, 6 weeks shy of 86, completely bedridden and disabled, was refusing food and water, not urinating and didn’t think she could breathe — and yet she was surprised.

I asked if she wanted me to make any calls so she could talk. No. The TV had been off for a few days now, and we were down to her caregivers, me, and her.

She said she was scared. I said what of. She looked at me like I was a total fool, and said, “Dying, of course.” She agreed when I offered to call a chaplain.

The rallying that was so dramatic with my father took a different form with my mom. My mom was exceptionally determined. She had strong opinions, and this blog is named after a phrase of her that could strike fear in those on her list (I’m going to have a little talk with him. . .”) while spectators would get the popcorn popping and wait for the fireworks. She was also pretty good at denial.

When my daughter and her boyfriend came by, she brightened up; she loved visits from my daughter. But after ten minutes, my mom told the two to get along with their evening and go out and enjoy themselves, that she had no intention of dying that night and that she would see them tomorrow. And the next day. And the next.

She tried the same with me, and I went outside to make some calls. Coming back in, I encountered the Perfect Daughter, there five days out of seven, who told me my mom bragged that she had “sent them all away.”

That was the last liveliness I saw from her. The night went on. There was no more conversation, just  “I can’t breathe” and “Help me,” and me watching the clock for when she could have more morphine. The intervals were less, the dosages greater.

My mother died around 9 am Thursday morning. I was not there. She was still conscious when my husband arrived to take over, and she was worried about me.

I was in the hospital waiting for an upper endoscopy.

Midnight I had gone to get the meds nurse; she had delivered the shot, and I was feeling a bit woozy, but blamed it on tiredness and stress and leaned my head against my mom’s railing. The next thing I knew, I was looking down on myself, and I was covered in blood, the chair was covered in blood, and there was a pool at my feet.

My mother was crying out,  “I can’t breathe. . . Help me.”

I had to tell her I could not, that I needed her to press the call button. She couldn’t. So I staggered into the hallway and yelled for help.

That was the last I saw of my mother, and the last she saw of me.

I had had my thirteenth portal hypertension upper GI bleed at her deathbed.

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Imminent Death: What Happens in the Last Days and Hours

Here are passages from a few more scholarly journal articles on the subject of what to expect when someone is dying.

The full text of this first article, “Ensuring Competency in End-of-life care: Controlling Symptoms” by Frank D. Ferris, Charles F. von Gunten, and Linda L. Emanuel  can be found here.  It includes 100 works cited, and the great thing here is that there are links to take you to the abstract or full text of the articles listed — if available freely. It looks to me that for at least half of these, such links are provided. Topics covered include:

Approaches to the medical management of pain, depression, anxiety, breathlessness (dyspnea), nausea/vomiting, constipation, fatigue/weakness and the symptoms common during the last hours of life… 

“Is This a Bad Day, or One of the Last Days? How to Recognize and Respond to Approaching Demise” by Geoffrey P. Dunn  and Robert A. Milch [Journal of the American College of Surgeons, Volume 195, Issue 6, December 2002, Pages 879-887] is freely available here. It has a lot of information, including good summary tables of changes that happen weeks to days and hours before death. A few highlights:

One of the most reliable criteria for differentiating a bad day from one of the last days is the patient’s own report. If the patient states “I am dying,” or has a sense of impending doom, experience often proves him right. . . .

To date, there are no validated, consistently accurate, generally accepted models for predicting life expectancy in either cancer or noncancer diagnoses. . . .

A study of 468 hospice referrals reflecting the national pattern of diagnoses admitted to programs showed that only 20% of prognostications of length of survival were accurate within 33% of actual survival. Sixty-three and one-half percent of physicians overestimated survival, averaging five times greater than the actual survival. More experienced physicians were more accurate, and those with a longer acquaintance with their patient tended to overestimate survival. . . .

Regardless of diagnosis, observable changes during the last days of life include (Table 4): profound weakness (asthenia) and bed-bound state, sleep much of the time, indifference to food and fluids, difficulty swallowing, disorientation to time with increasingly brief attention span, low or lower blood pressure not related to hypovolemia, urinary incontinence or retention caused by weakness, loss of ability to close eyes, oliguria [low output of urine], vivid dreams or nightmares, patient reports of seeing previously deceased individuals important to the patient, frequent references to “going home” (not their street address!), or speech content related to travel to a final destination. . . .
Very late changes (Table 5) related to changes in both brain stem and cortical function heralding demise within a day to hours include: changes in respiratory rate and pattern (Cheyne-Stokes, apneas); mottling and coolness of skin from vasomotor instability with venous pooling, particularly in the pretibial [shinbone] region; dropping blood pressure with rising, weak pulse; and mental status changes (delirium, restlessness, agitation, coma). The majority of patients are comatose at time of death, though up to 30% of patients are reported to be alert until moments before death.

“Care of the Dying Patient: The Last Hours or Days of Life” [BMJ. 2003 January 4; 326(7379): 30–34] can be read here. Drs. John Ellershaw and Chris Ward begin with this fairly amazing observation:

We searched Medline from January 2000 to March 2002 in the English language by using the terms “palliative care” and “terminal care.” The search yielded 253 references, but only a limited number of articles were directly related to the care of dying patients.

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Imminent Death: How Good Are Doctors’ Guesses?

This series of  posts continues to look at some fairly technical articles which nevertheless may be of use to you if you are facing the prospect of the imminent death of a family member or friend.

 This study,  “Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study”  by NA Christakis and EB Lamont first appeared in 2000 in the British Medical Journal [BMJ] in volume 320,  pages 469-472, but is available freely without university library access.

This is a summary of their findings:

What is already known on this topic

Doctors’ prognostic estimates are a central element of both patient and physician decision making, especially at the end of life

Doctors’ prognostic estimates in their terminally ill patients are often wrong and usually optimistic

What this study adds

A prospective cohort study of 504 terminally ill patients and their 365 doctors found that only 20% of the doctors’ predictions were accurate: 63% were overoptimistic and 17% overpessimistic

Multivariate modelling showed that most types of doctors are prone to error, in most types of patients

The greater the experience of the doctor the greater the prognostic accuracy, but a stronger doctor-patient relationship is associated with lower prognostic accuracy.

As one commentator on the study put it,

Doctors may be reluctant to acknowledge that patients they know well are close to death. This can be compounded by the patient’s and family’s preference to keep hoping for the patient to live longer. Those of us who know our patients longer often become attached to them. We, too, hate to admit that death is near.

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Imminent Death and Spontaneous Return to Mental Awareness

The day before he died, my father, who over the course of several years had suffered a steadily decreasing awareness of and interest in his and others’ lives, finally appearing to no longer have an inner life, suddenly, briefly and inexplicably returned to the world. I described this here.

I’ve found out two things since then. There are many anecdotal reports about this phenomena, and there is next to no medical research, explanations, or theories about how this happens.

I can’t really imagine how researching an unexpected event could proceed. I suppose there could be people on call, like transplant teams, but then what? Would the dying person who has returned one last time to engage with the world be rushed into an MRI and subject to various medical tests? Perhaps some would agree to this, if they believed that by so doing others could be spared their suffering, and if they were asked before they lost the mental capacity to make that decision: you can see the difficulties.

I finally found one study about this subject: “Terminal Lucidity in Patients With Chronic Schizophrenia and Dementia: A Survey of the Literature” by Michael Nahm and Bruce Greyson, published in The Journal of Nervous and Mental Disease (December 2009, pp 942-944).

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