I guess my general perception about hospice was that death is imminent. However, we've recently had a consult for our father, who is in his 90s and suffering from dementia and has recently become unresponsive and is not eating. The Hospice caretakers were called in for a consultation, and now plan on visiting him 3x/week. They've instructed that he not be brought to the hospital for emergency purposes (recently was sent for uncontrolled shaking which we never learned the cause of but it went away) and said their goal is to assess his care and keep him comfortable but that this could go on for a while. Our mother's friend said her husband went through something similar for almost a year. Is this standard, or an anomaly? |
So sorry. If he’s not eating, and it already frail, then probably not long. A few months at most. This is common at end of life and is actually not a bad way to go. |
Hospice care is for people who are terminal and have decided to discontinue life saving measures. Hospice keeps them comfortable until they die, however long that is. If you still want life saving measures to be used, it’s not time for hospice yet.
I’m so sorry. |
Hospice is for people with a life expectancy of six months or less. Some people outlive this and the authorization can be extended, but for most people it's less. I have seen studies that the median time is about 3 weeks, the average time in hospice is 10-11 weeks, and about 10% surviving more than 6 months.
I am sorry, OP. |
Until they pass on, unfortunately, there’s typically not a timeline due to the obvious unknown nature of the situation. They might come more often if you need additional help but not eating is an indicator the end is near. I’m sorry to say that, but I think you already know that. Enjoy and value the time you have left, you never know what tomorrow holds for anyone. |
So sorry OP. I had hospice with both of my parents. My mother was just a few weeks and my father was much longer - 15 months - we almost got kicked out because he stabilized so much - but thankfully they renewed him and continued to come 3x a week which is standard.. Both of my parents were in their 90s. Hospice really understands the dying process and was very helpful and comforting to both my parents and family members. Wishing you and your family the best. |
If a DNR is his wish make sure you have that signed or hold medical power of attorney to make that decision should take time come. |
Thank you for this. Yes, I believe we are at the point where we are no longer pursuing any life-saving measures save those that alleviate discomfort or pain. I'm just wondering how much longer he can be expected to continue like this. His quality of life has severely diminished over the past year or two, but this recent turn seems to cement it. The whole "one year" thing just kind of threw me, although my mother's explanations on issues like this can often get garbled. |
My Aunt is in palliative hospice care also for dementia. She is 84. She is in a facility though and has been there about a year now, once she was unable to live alone safely. The last 2 weeks she had not eating and on oxygen 24/7 so I think the time is coming. |
We had hospice for over a year and she got better (physically) with their help and they pulled out. A few weeks later she declined without their help and they came back in and it was a matter of weeks. |
Its impossible to guess. |
Yes unfortunately op it is very difficult to know and while it is true that some folks live longer than expected like in the example from your mom, it is not the norm. Hospice can be a wonderful service for a loved one to help keep them comfortable. Often folks think of it as imminent because to be honest, drs are pretty bad at helping families realize that medical intervention is no longer likely to increase quality of life. Drs have a really hard time with these conversations so often people receive hospice services far later than might have been helpful. It sounds like you are doing it at the right time before too much suffering back and forth from the hospital which is really hard on people but ESPECIALLY people with dementia. Very sorry for your loss op. |
To be eligible for Medicare coverage, the physician has to state that the patient has less than 6 months to live. However, once on hospice, a patient may remain on hospice as long as the physician continues to believe the condition is terminal. So you aren't "kicked off" in 6 months.
In reality, many people do wait to go on hospice until very near the end, because they and/or family members are struggling to accept that the condition is terminal, and don't want to give up treatments that are considered curative, or just don't want to give up hope. |
Hi OP. I am a hospice chaplain. I've worked in hospice for almost 20 years. I'm happy to answer any questions you have, non-medical of course. In order for a patient to qualify for hospice care, a physician must certify that given a normal progression of the disease, death is likely within 6 months. That does not mean the patient will die in six months. Doctors can re-certifiy every six months assuming the patient continues to decline. I've seen people on hospice for three years or more.
There are signs that occur when a patient begins the active dying process. They will stop eating and drinking. They aren't hungry or thirsty. Our bodies know how to die. We don't need food or liquids once we start dying. Pushing fluids can actually cause a lot of discomfort in a dying patient. Another sign is sleep. Patients begin to sleep most of the time. Sometimes they can be awakened, but for the most part they are sleeping. Breathing changes. Skin color changes. They may begin seeing deceased loved ones. The reason they don't want you to go to the ER is because once a patient is on Hospice, we take over. If pain is not being controlled or your dad seems anxious, you'll call your hospice nurse. We don't want patients to deal with the trauma of an ER visit. It's just not necessary. Most patients want to die at home, but that's not always possible. If caring for your dad becomes difficult at home, he can be transferred to an inpatient facility. Hospice care is about living, not death. We want patients to be as comfortable as possible so that they can spend time with the people that they love. I think our doctors, nurses, pharmacists, and CNAs do an amazing job of getting and keeping patients comfortable. Hospice is a team effort. You'll have all the medical folks involved plus social workers, grief counselors, chaplains, and volunteers. Please let them help. Take advantage of the resources available. Oftentimes Hospice care is a marathon, not a sprint. I'm sorry about your dad. It's hard to lose a loved one no matter how old they are. Wishing you peace as you begin this journey. |
There’s a fine line between “palliative” care and “healing” care. If a given condition is causing pain, discomfort or distress, it should be ameliorated even if that can only be done at a hospital. There’s also a fine line between letting nature take its course and hurrying things along. Not everybody in the end of life business is as sensitive as they should be to those distinctions.
Turning to your specific question, if your father in fact is eating nothing, his outside life expectancy might be a month, but as a PP pointed out it is likely to be less because he is already quite debilitated. If he stops hydrating the outside estimate shortens to about a week or so. Your father is lucky to have people who care about him. Don’t let anybody rush you or railroad him. |