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FAQ: What might I expect to happen when someone I’m caring for is dying?

23:01 EDT 9 Jul 2019 | GRACE

H. Jack West, MD, Founder, President and CEO

From the Grace Archives | Originally Published May 6, 2011 | By Dr West 

This is a difficult topic for many people to think about, and especially to bring up in a public forum, but people still want and need to know what they might expect as they or someone they care for are declining. It is understandable to fear the unknown, and to fear suffering. I would say that there are a few leading points here:

1) Most patients don’t suffer much as their cancer progresses and as they transition through the dying process.

2) This process is quite variable from one person to another, but we typically have a good idea of what a patient’s leading problems will be weeks to months before a person is experiencing a more rapid decline.

3) Engaging hospice services/palliative care can help guide expectations and generally manage many of the problems effectively by anticipating them, rather than waiting until very late to accept palliative care.

While I would never want to romanticize or minimize the challenges of the dying process, I find that the majority of my patients experience a controlled decline in which they really don’t suffer. The most common pattern I see is that someone with a progressing cancer will slow down, eat less, begin to lose weight more steadily, and just gradually become less and less active. They no longer go out on walks, then leave the house less often, then spend more time alternating between sleeping and getting up in a chair, then eventually get to a point where they are sleeping most of the time and are pretty much bed-bound. They have less interest in eating, which is sometimes frustrating to the patient but often more so to the family and supporters of the person, who may pressure the patient to force down food that they have little or no appetite for (the danger is that some patients describe distress from the unyielding pressure from well-intentioned but nagging loved ones). Soon, they are sleeping more and more, to the point that they eventually sleep all of the time and are no longer communicative; this is followed by irregular breathing, more prolonged pauses between breaths (called agonal breathing, though it isn’t uncomfortable for the person, just a reflex — the last phase of the dying process), and then they stop breathing. It’s important to remember that this common pathway of progression isn’t a lack of will on the part of the person with progressing cancer: they would eat and be more active if they could, but the cancer pours out toxic proteins that mediate this inexorable process.

It’s true that some patients have pain, or a terrible cough, or shortness of breath, agitation, and other problems, but I would say that most of the time, we have signals that these are going to be issues for a long while before the later stages, and it’s advisable to deal with them as aggressively as possible before these symptoms become a crisis. Secondly, I most commonly see problems emerge when people (patients and/or their doctors) are very resistant to enlisting hospice support, which typically does a very good job of addressing symptoms proactively, before they become a crisis, and also being able to provide the comfort of helping patients and families/caregivers to understand what to expect in the near future. Just as on a plane, turbulence is much easier to understand if you know to expect it, what it represents, and how you’ll get through it.

About 20 years ago, I spent some time in medical school doing home visits with the very compassionate and thoughtful Medical Director of a Boston hospice. I asked him about his feelings on euthanasia, and he told me that he didn’t actually feel that it was a pressing need in almost any cases. Specifically, he noted that it was most common for people to fear two things about dying: being alone in being in pain. Though being a primary caregiver is a very hard job, it is a great blessing to have someone there to help as a caregiver to a terminally ill patient — something that even attentive medical care can’t substitute for. That care and the ability to ensure that people aren’t alone is incredibly helpful. But a medical team today can usually do a good job to minimize the physical suffering of the process — to relieve pain and other symptoms. And most of the time, what we see is a patient gradually withdrawing and eventually passing comfortably.


13 Responses to FAQ: What might I expect to happen when someone I’m caring for is dying?

  • cards7up says:

    May 6, 2011 at 5:30 pm

    One other thing to note, is the patient may go into a coma and never wake up. This is how my mother passed. Pain and labored breathing were relieved by meds and she passed within 2 hours of going into the coma. Take care, Judy

  • Laya D. says:

    May 6, 2011 at 9:10 pm

    Thank you, Dr. West. This is a very difficult topic. . .one that tends to consume my thoughts when it’s late and dark and I’m insomnic.

    Laya

  • Dr West says:

    May 6, 2011 at 11:03 pm

    Being in a coma is really the same thing as becoming unresponsive, which is a late stage of the process, transitioning into the irregular breathing, and then breathing stops. Sometimes, this transition lasts for just minutes or a few hours, but sometimes it can be days.

  • dqmar says:

    May 7, 2011 at 5:02 am

    Thank you for this post, Dr. West. Mom has been experiencing the sleeping and eating issues for several weeks now. However, yesterday she slept only 45 minutes all day and ate more yesterday and actually sat at the dinner table with us last night and ate! She ate and drank mid afternoon as well.

    It is so hard to prepare for what is coming when you see the symptoms for a period of time and then they go away.

  • Fighting_Ray says:

    May 8, 2011 at 8:08 pm

    First I want to say hello to everyone! I know it’s been a long time. I love the new website!

    This topic is very difficult one. I can really relate to the process outlined. Both dad and grandma slipped into a coma and just started breathing heavy, eventually they stopped breathing.

  • B-1 83 says:

    May 9, 2011 at 9:16 am

    Nice job on a tough topic, Dr. West. Much like Laya, I often lay awake at night next to Teacher Wife wondering what the end will be like.

  • katiejolove says:

    May 9, 2011 at 5:07 pm

    This also keeps me up at night and crosses my mind at various times. It is so scary to me and I perceive it as being an awful thing that includes much suffering. This was a nice reassurance that this usually isn’t the case. Although as a child I know I will one day likely experience this, I just hope and pray it isn’t for a long long while.

  • Roisin says:

    May 9, 2011 at 10:05 pm

    Thank you for this.

  • pipfitz says:

    May 10, 2011 at 2:01 am

    I like the new website Dr West, congratulations on all you do! Particularly on this difficult topic, few doctors who are involved with actively managing cancer are willing to engage with it. We will all die, but it is more likely that someone with advanced stage cancer will die sooner. Having watched my husband die, holding his hand as he passed, I can’t say it was easy. But it was the death he would have wished for, at home and in no pain. Your advice to get hospice/palliative care involved early and to foresee what might be needed and deal with likely difficulties before they actually happen is excellent. I wish more doctors would give it.
    All best wishes,
    Pippa

  • dbrock says:

    May 10, 2011 at 12:31 pm

    A year ago it would have been a very hard thing to imagine, but I now totally believe that what Dr. West writes is spot on, having sat through a month of decline, and carefully watching every second. Even though any little ‘improvement’ gives you a small bit of hope at the time, what I know now is that when we see ‘improvement’, it reflects comfort. A small smile, a raised eyebrow. A response to a song. :)

  • SherryS says:

    May 13, 2011 at 1:17 pm

    Thank you for another insightful post. I fear we may be coming to this point with my dad in the not too distant future and it’s already comforting to read your words. They make me less fearful of what it will be like.

  • Rita says:

    June 11, 2011 at 1:53 pm

    Thank you, Dr. West, for broaching this topic! I haven’t been here for a while because I’ve been so involved with my husband’s care. He also seems to be approaching the process you’ve described. He may actually be in the beginning of the process–he hardly eats any more, he hardly wants to drink, though I try to encourage him gently to do both and am to some degree successful; he goes from the bed to the couch to the bed and sleeps a good part of the day, not engaging in much, and yet he still cracks his jokes.

    I can’t really talk with him about dying in a direct way, but the doctors called in the visiting nurses and luckily the organization here is both visiting nurses and hospice, so their presence isn’t threatening to us and is extremely helpful. I assume we’ll be able to “slip into” hospice quite naturally when the time comes, but it does feel to me like we’re beginning to get some of the hospice services already.

    Anyway, your post is so helpful to me and helps me become more conscious of what now may be in the process of occurring. The information you’ve given relieves some of my anxiety about him having to suffer really badly. Thank you so very much!

  • Apra says:

    August 18, 2011 at 6:49 am

    This is a helpful post but many cancer patients on chemo also experience the same things, so are you talking about those who are no longer on any kind of treatment?
    My husband does not like to get out of the bed much though he is awake and alert and plays games on his phone all day. He does not like to move about because of bone mets.
    So maybe wanting to stay in bed can be two kinds.
    Thanks Dr. west, I know somethings now that I had not thought of before.
    Apra

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