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.

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.

Continue reading “Imminent Death: How Good Are Doctors’ Guesses?”

Imminent Death: Best Guesses of How Much Longer

“Imminent death” is a search term that brings a lot of people to this blog. I am going to be adding more posts on this subject and collecting sources mentioned in a permanent page (as opposed to a post) as I go along.

One problem is that a lot of this material is in journals that you may not be able to look at for yourself because they are subscription only. The best way around this is to find someone enrolled in a college or university and ask to be allowed on via their ID/password. If you can get into a research library, and if the library still purchases hard copies of journals, that is another route. And it used to be true that if that library is a depository for government documents, you had to be admitted — at least to that area (but once in, well…). But that may no longer be true.

So one thing I’m going to do is to quote extensively here.

As I’ve noted before, it is surprisingly difficult for doctors or nurses to predict just how much longer a terminally ill person has left. This study, “Extent and determinants of error in doctors’ prognoses in terminally ill patients: prospective cohort study” [BMJ. 2000 Feb 19;320(7233):469-72] compared their doctors’ estimates for the time remaining to 468 terminally ill patients to the actual amount of time they survived. Authors Christakis and Lamont reported [emphasis added by me]:

Our study of 365 doctors and 504 hospice outpatients found that only 20% of prognoses were accurate. Most predictions (63%) were overestimates, and doctors overall overestimated survival by a factor of about five. These prognoses were doctors’ best guesses about their patients’ survival prospects, objectively communicated to the investigators and not to patients themselves. …  the tendency of doctors to make prognostic errors was lower among experienced doctors. Moreover, the better the doctor knew the patient-as measured, for example, by the length and recentness of their contact-the more likely the doctor was to err.

These findings have several implications. Firstly, undue optimism about survival prospects may contribute to late referral for hospice care, with negative implications for patients. …Doctors who do not realise how little time is left may miss the chance to devote more of it to improving the quality of patients’ remaining life. Secondly, to the extent that doctors’ …prognostic information affects patients’ own conceptions of their future, doctors may contribute to patients making choices that are counterproductive. Indeed, one study found that terminally ill cancer patients who hold unduly optimistic assessments of their survival prospects often request futile, aggressive care rather than perhaps more beneficial palliative care… Thirdly… disinterested doctors, with less contact with the patient, may give more accurate prognoses, perhaps because they have less personal investment in the outcome. Clinicians may therefore wish to seek “second opinions” regarding prognoses, and our work suggests that experienced doctors may be a particularly good source of opinion.

Some of the key points are summarized here.

Continue reading “Imminent Death: Best Guesses of How Much Longer”

How to Know When Death is Imminent, Signs Someone is Dying

I know that this post’s title is awkward, but these are the terms I used when searching for information when my father was dying.I knew nothing about the process he was undergoing, but then when would I have learned about dying? The basics of conception, gestation, and birth are covered in health courses, but not dying. So I started looking for answers. If the post’s title’s phrases have brought you here, I hope you’ll find these notes useful. 

Nearing the End of Life

There’s a lot of good material in Nearing the End of Life: A Guide for Relatives and Friends of the Dying by Sue Brayne and Dr. Peter Fenwick in association with the Clinical Neuroscience Division of the University of Southhampton (UK). Dr. Fenwick is a leading researcher in End-of-Life Experiences and their importance for the dying and the bereaved, a topic of interest to me.      

This document describes the physical signs of impending death, but is especially concerned with the psychological conditions of both the dying and the bereaved. Sections include advice on what people need as they reach the ends of their lives, how to talk with them, what to do if you can’t be with them, different types of end-of-life experiences that may — or may not — occur, and what to expect at the moment of death, noting that even though it’s impossible to predict how much longer a person has, the actual moment of death is just that– a moment–that is quickly over and easily missed.    

How Much Longer?

 One of the first things I found out was that when hospice nurses told me they could not tell me if my father would live for another day, or week, or month, they weren’t being evasive or attempting to make sure I wouldn’t blame them for telling me he had a week, when he had a day, or vice versa. Some doctors and nurses told me that their intuition about how long before a person died was generally, but not always, correct, but they couldn’t explain it.    

As I read more about this I was surprised to learn that  the “term ‘final hours’ refer to the last four to 48 hours of life“; this seems to me a fairly wide range of time.     

Care at the Time of Death

As best I can there’s no formula to use to predict how many hours or days remain. It’s not like you can plug respiration, pulse, blood pressure, and temperature into an equation and get a timeframe. But I finally found an article that presents data collected regarding several signs of impeding death, Elizabeth Ford Pitorak’s article “Care at the Time of Death,”  part of a series on palliative nursing published in the American Journal of Nursing. The goal of palliative care is providing relief to a terminally-ill person through symptom management and pain management. Pitorak reviews one study of a 100 terminal cancer patients that reported:   

the death rattle (if it developed) occurred first at a mean of 57 hours before death and was followed by respiration with mandibular movement at a mean of 7.6 hours before death. Cyanosis of extremities took place at a mean of 5.1 hours before death, and pulselessness on the radial artery occurred next at a mean of 2.6 hours before death. Consciousness was measured using a categorical scale of awake–drowsy–comatose. At one week before death, 56% of the patients were awake, 44% were drowsy, and none was comatose; in the final six hours of life, 8% were awake, 42% were drowsy, and 50% were comatose. . .   

I’ll try to save you searching glossaries: The death rattle is a gurgling sound. Mandibular movement refers to the jaw moving, like someone is eating air. Cyanosis of extremities means that arms and legs may become cool to the touch and bluish. The radial artery is where a pulse is felt on the wrist.    

(Note, however, that this study considered only people dying of cancer, not for other reasons. See “Predicting Active Dying” for more about this.)   

Unlike “Nearing the End of Life,” intended for people inexperienced with death and dying, the audience for “Care at the Time of Death” is nurses working with terminal patients. You can learn a lot from reading what isn’t necessarily intended for your eyes. Consider this passage:   

Written information, such as pamphlets, can be provided, but should be regarded as supplementary (see Final Days, page 47). Family members usually do not understand the implications of some of the observable changes, and these should be explained. For example, a primary nurse may tell the family that mottling is increasing, the patient is becoming less responsive, and his blood pressure is decreasing— and family members who have been sitting vigil continuously might decide to go home to rest, unaware that what they have just been told indicates that their loved one will probably die within the next few hours.

I appreciate Pitorak reminding her readers — experienced nurses — how easily people in one field forget that their language and knowledge are not universally understood.

More Resources

Growth House, Inc. : Here’s a source I came across very recently that I intend to look at soon. Its mission statement suggests it should be a good place to begin reading about this topic:

Our Mission: Growth House, Inc., provides education about life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration. Our search engine gives you access to the Internet’s most comprehensive collection of reviewed resources for end-of-life care.

Duke Institute on Care at the End of Life: This useful site has its own list of resources to follow up.