Havealittletalk's Blog

November 29, 2010

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.

Their particular interest is the “complexities of diagnosing dying” in patients with heart failure.

Predicting when death is imminent is particularly difficult in patients with heart failure for several reasons. Worsening heart failure is not always the result of an inexorable progression of the underlying pathology. In many cases a reversible cause exists (for example, a chest infection, anaemia, an arrhythmia, or suboptimal or inappropriate heart failure drugs), the correction of which may induce a worthwhile symptomatic remission. Furthermore, the use of standard diuretics, inotropes, and vasodilators in varied combinations may produce an improvement, albeit only temporary. The variable effects on outcome of these clinical and iatrogenic scenarios may partly explain the failure of many attempts to identify sensitive biochemical or haemodynamic markers of the end of life in individual patients.

Experienced clinicians will recognise a subgroup of patients, admitted to hospital because of worsening heart failure, whose prognosis seems to be particularly poor. In our experience, currently the subject of a prospective review, these patients are often characterised by:

  • Previous admissions with worsening heart failure
  • No identifiable reversible precipitant
  • Receiving optimum tolerated conventional drugs
  • Deteriorating renal function
  • Failure to respond within two or three days to appropriate changes in diuretic or vasodilator drugs.

While others steadily improve, such patients often continue to worsen, although they may survive for a week or more. Before this point is reached, the likelihood of recovery and the justification for continuing invasive treatments or monitoring should be reviewed and discussed with patients and carers. .  .  .

A constant source of frustration and anger voiced by bereaved relatives is that no one sat down and discussed the fact that their loved one was dying. If relatives are told clearly that the patient is dying they have the opportunity to ask questions, stay with the patient, say their goodbyes, contact relevant people, and prepare themselves for the death.

I couldn’t find a full text free source for the next article [abstract], but the passage I quote will give you a sense of it, and perhaps you can get into a University’s collection of e-journals. It seems to me that that should be easy at state schools, supported by your taxes, but that is a whole other topic. In “Terminal Care: The Last Weeks of Life, ” [Journal of Palliative Medicine; Oct. 2005, Vol. 8 Issue 5, pages 1042-1054], William M. Plonk and Robert M. Arnold write:

Several clinical features have been identified as indicators of death within days, but research investigating the reliability of these signs is scarce. Evidence does show that physicians consistently overestimate patient survival, and those most familiar with the patient are often the least accurate. One observational study in terminally ill patients with cancer noted that patients on average developed respirations with mandibular movement 8 hours, acrocyanosis 5 hours, and radial pulselessness 3 hours before death but there was wide individual variation, with most patients developing these symptoms less than 2.5 hours before they died. Decreased consciousness was identified in 84% at 24 hours
and 92% at 6 hours prior to death. Development of a death rattle is predictive of death within 48 hours but typically occurs in less than half of patients. With the exceptions of drowsiness, fatigue, and confusion, symptoms in patients with cancer followed at home tended to improve in the last days of life. According to expert opinion, other symptoms of near death include becoming bedbound, irregular breathing, tolerating sips of fluid only, and cool or mottled extremities.

I emphasized with bold type some phrases I think it is important to bear in mind.

Mandibular movement refers to the jaw moving, like someone is eating air. The death rattle is a gurgling sound. Acrocyanosis is the same as cyanosis of extremities and 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, so radial pulselessness means the pulse is too weak to feel there.

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15 Comments »

  1. Thanks for the post. I got more insights on how people in In home hospice care can determine if the patient is nearing the end.

    Comment by artsmishap — September 6, 2012 @ 4:06 pm

  2. Can I simply say what a relief to find someone that truly understands what they are discussing on the net. You certainly know how to bring an issue to light and make it important. A lot more people have to read this and understand this side of your story. I can’t believe you’re not more popular given that you definitely possess the gift.

    Comment by what causes low blood pressure — October 25, 2012 @ 6:06 am

  3. Thank you. My dad is in hospital with terminal cancer. I was hoping to get him home tomorrow but was told maybe Wednesday. I saw a change in his skin colour and appearance on Friday and when I called this morning they said they are doing his obs every hour as his blood pressure is very low. My dad has a dog which he adores and they have asked me to bring it up to hospital today. This is great but I’m scared my Saudis at end of life. Reading our notes has given me an u dear standing of what’s happening. Thank you again.

    Comment by Janice — November 18, 2012 @ 4:04 am

  4. I just read the above direct page. I wish I had seen this before. So many things I saw or recall seeing in dad before his death. The medical community does feed into this frustration you mentioned about people wishing they had been told what to watch for. My father was still being given blood transfusion the day or so before he passed. In a wierd way I wonder why they did that when they knew he was declining so much. (hard to word that statement re the blood transfusion…Im glad they tried to help…but it feels like they knew more than they told us). God Bless you Dad. and god bless the writer of this blog.

    Comment by M — January 7, 2013 @ 12:19 am

  5. I wanted to thank you for all the wonderful information you have complied on this topic. I am currently the caregiver to my 93 year old grandpa. For the past 2 months I have been watching the once spry young man decline so badly and his doctors just labeling it old age. I know now that his time is coming to an end soon. You site has helped me understand so much more of what he is going through and has lead me to numerous places to find ways of helping him through this will as little difficulty as possible. Your posts have been an answered prayer for me. Thank you!

    Comment by shyflutterby — January 8, 2013 @ 1:14 am

  6. I have just left my dad’s bedside and travelled home with a heavy heart at feeling I guess so helpless. I wish I had read this earlier as the last 2 weeks have been so distressing and I avoided reading articles on the net as I thought they’d make me feel much worse. How wrong I was. Though this time is never going to be easy having this kind of information is indeed a gift. Thankyou for sharing.

    Comment by Denise — January 19, 2013 @ 1:04 pm

  7. Being another Denise who has also just left Dads bedside, and read the above comment —- I can only Duplicate it.
    The information has helped me come to terms with the inevitable, and to help my Mum face the future. Appreciated

    Comment by Anonymous — March 20, 2013 @ 1:20 am

  8. Howdy! This is my first comment here so I just wanted to
    give a quick shout out and say I really enjoy reading your articles.
    Can you recommend any other blogs/websites/forums that cover the same topics?
    Appreciate it!

    Comment by Best E Cigarette — June 12, 2013 @ 9:48 am

  9. Beverly says: “Thank You VERY Much for enlightening me re: Last, days, hours, minutes as I have been with my fiance 24/7 and these last 2 1/2 MONTHS..And I “knew” that something was happening.I checked out alot of sites these past few weeks and EVERYTHING that YOU have written has been happening since April 23rd 2013 & is EXACTLY in order just as YOU have written, EVERYTHING. Thanx soooooo much for SHARING this info with me…It has helped me tremdesly and I am FOREVER GRATEFUL to YOU (who ever YOU are :-) it is helping me to deal with what it looks like may be happing at any moment. I have been in denial about Jimmy going bye bye (can’t) don’t know HOW *To Let Go & Let God…….It is NOT in my control, it never has been altho I believed it to be. I LOVE him soooooo very very much. He’s the BEST FRIEND that I have EVER had. PLEZ keep us in your prayers that God’s WILL, will be done…..No matter WHAT that is and I can no longer to keep trying NOT to “let go”, I am beginning to GROW in this experience “as we speak” God Bless YOU from the bottom of my heart. I just don’t think that I can function without him. Jimmys is almost 83 years YOUNG and I am almost 65. We have not been able to marry due to the FACT that I will LOSE my Medicare/Medicaid. Excuse but that sucks. I Love him sooo very much. Thank you ALL for listening, you have lightened my load just these last few minutes since I JUST came across all this info. People have been telling me for weeks to get “HOSPICE” in here…………..I dunno, what do they do??? I thought it was only for people who were dying of cancer? He does in fact have cancer, it has come back TWICE in 1 1/2 years, it is lymphoma, 1st time in his tummy, intestines, )and now in his neck (lymph nodes) I’m SCARED…………………….

    ~Miss ALASKA 2013~ 4:36 a.m. & 58* outside~ :-) My friend says that HOSPICE DOESN’T say “dying” but that the person is going thru their “JOURNEY”, is that so?? *ANYONE* Plez anything that you may be able to help me deal with, accept, understand better >>>>> PLEZ feel free to contact me @ lostinthe60s@gci.net PLEZ NO weirdo’s. He was only “clean” for 5 months and i truly BELIEVE that God alloted us this length of time so someone, some how would be able to share and HELP me deal and accept WITHOUT me going off my rocker and into a very deep state of DEPRESSION which I “DID” Jan 8th 2012 and ended up in a couple hospitals, lost my hair, lost 60 lbs in 3 months, couldn’t walk for 8 months, right side of my body paralized, couldn’t talk, write, nothing, nothing at all, and NO ONE seems to be able to explain why I reacted in this way I can’t remember MOST of 2013. I also went thru head and neck cancer in 2003 YES, I AM A SURVIVOR.

    Comment by Beverly Baker (Bevie). — July 5, 2013 @ 8:49 am

  10. May I ask a more private question? What sort of movies do you really enjoy?
    The real reason for asking is I think it’d be great to learn a little more about the author, thanks!

    Comment by Toronto Asbestos Removal — July 16, 2013 @ 9:33 pm

  11. After weeks of research on net this is best information. Drs wont commit just say my CHF is severe but I know not long now. I am a 53 yr woman. Have been bedbound this week, confused at times and really cold most of the time. HR and oxygen erratic, bad SOB and constant chest pain. I range from being philosophical to depressed. My partner is sad and anxious. Last few days my very standoffish cat has been cuddling up to me with her head on my heart. Trying to hold out for Xmas but suggested friends get presents they would like back when I go. I tell everyone u cant take life seriously cos u dont get out alive. Love and hugs to all. C ya on the other side xxx

    Comment by Question everything — November 23, 2013 @ 9:10 am

  12. Thanks for all the information, it has been very helpfull in understanding what my nanny is going through right now, my nanny is 90, she had a fall just before Christmas, was found 10 hours later, so was taken to hospital, I’ve been with her almost every day and first watch her eating and drinking decline, then her weight dropping steady, she gone from a size 18 to a mare 8 in just more than a month, even though I see her almost every day, I could see her declining which is very upsetting for me and all our family, she was moved in to palative hospital about two weeks ago, she went from sitting and walking to bed bound now, she is refusing all her meds last week, and only taking sips of water to wet her mouth and only a mouthful of food three times a day , the last few days have been really hard, she has been sleeping on and off, talking of seeing loved ones who have passed, she did perk up a bit yesterday, asking for food and being very thirsty, but last night she has become very restless , shouting help me, being very confused on who goes to see her, very sleepy, her hands and feet are a bluefish purple, the doctor last night called us in and told us she has not got long, so we been up to see her today, she has been asleep all the time, has been shouting help in her sleep but not responded to us or the nurses or even touch so we know it won’t be long for her, she not had any drink at all since yesterday and on end of life care so the doctors won’t give her any fluids just make her comfortable, we noticed through her charts she had no urine output for last three days to, her sat levels oxygen levels are 80, over the last week her temp has continued to drop is now 35 , her blood pressure to has also continued to drop very low now 60/50 and she taking long pauses between breaths, it has been a pain staking journey for nanny, a long lingering one, makes you think about your own life, also us watching her in pain, Hope she is at peace soon

    Comment by Sandra — January 21, 2014 @ 7:05 pm

  13. my husbands icd was switched off eight days ago as he as end stage heart failure but seems now he is healthier than ever although was told he had only days left he is sixty one years old can anyone enlighten me what is going on thanking you

    Comment by Anonymous — February 27, 2014 @ 9:54 am

  14. Hello Hun, sorry to hear about your husband, my thoughts are with you, your husband may look better but he prob given up, so his body is using all the energy left, try and enjoy this time and tell him how much you love him etc, my nanny died in January and she looked so healthy to, she looked better than ever she died a week later, it’s very confusing stuff indeed but part of dying, I hope this brings some comfort to you

    Comment by Sandra — February 27, 2014 @ 3:11 pm

  15. Thank you so much for your article. My husband was diagnosed with endstage liver disease ( cirrhosis) and I was a nurse for 23 years, but was looking for reinforcement and parameters to the final chapter of our life together. Hosparus is a true blessing, but sadly when it comes to liver disease versus liver cancer, it took two tearful, stressed months before he hit the parameters to accept him. And when they did take us aboard, he is estimated to have from “in a matter of hours to up to ten days”. Once I worked past the anger of being denied three times before being accepted ( they have to follow the guidelines set forth by Medicaid even though we are private insurance) the help with the pain meds, meds for respiratory congestion, and for the phenomenon called terminal aggitation was sooo helpful. My husband went from two days F&P that aggitation into a very sedate, light coma-like state of opening eyes, talking barely, and then like a lightswitch drop immediately into a sleep. Hosparus also warned me that liver patients could start massive bleeding from nose, rectum or thru urinary tract, so took precautions with adult diapers, as he would have fought tooth and nail yesterday. We are at day 6 of the up to ten days. Will be watching for some of the listed signs–will help me have a better idea when to call his sibling..or even safe to take a one hour nap. I know it is not an exact science, but this is a jumping board. Thank you from a sad but grateful heart.

    Comment by Jo — August 27, 2014 @ 1:42 pm


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