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Hospice Care/Mum given 8 weeks to live

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Hi Christine,

I'm from the UK but I hope that won't impact on the information you're able to give me?

My mum has breast cancer which has now spread as secondary cancer to her brain and bones. She was told in November that it was terminal and following the latest MRIs the doctors have now told her she has about 8 weeks to live.

At the moment she goes to a hospice twice a week, but they have told us that there will be a space for her when her condition deteriorates further.

My question really concerns what to expect. My mum's a single parent and I am one of five siblings. All of my siblings have autism and related conditions, my youngest brother is only 15. As you can imagine this has been very traumatic for them. I am trying to support them and one of the ways I can do this is to prepare them as much as possible for what will happen. So the kinds of questions I have are:

- How is she actually likely to die? I don't really understand how cancer generally ends your life?
- How quickly will she deteriorate? At the moment she can still walk around and communicate etc.
- How conscious/aware of things will she be at the end?
- How much warning do you usually get that death is imminent?
- Will she stop eating and drinking?
- What drugs is she likely to be given and how will these affect her?

I suspect I'm asking questions that you can't answer, because I'm sure no death is the same. But I would be grateful for any 'most likely' scenarios so I can prepare my brothers. They have said they want to be there when she dies and my understanding is that this will probably be possible. So I guess I want to try and say something to them along the lines of...'This is what mum will look like, this is what the nurses will be doing, this is what she'll be able to say or do, this is how she'll look, this if how she will actually die.' I don't really understand whether she'll slip into unconsciousness just before or days before.

Any likely scenarios, as detailed as possible, would be immensely useful. Even if you can give me some different possibilities that would be great because at least I can tell the boys it will be like this or that...

I'm sorry for asking so many questions, especially as I'm not sure how much you'll be able to answer. I just haven't been calm or coherent enough to ask these in person at the hospice. I'm completely falling apart but know that somehow I have to keep it together to try and help the boys because I'm all they have.

Thank you in advance for any answers xx

Answer
Dear Lizzie:

Thank you so much for writing to me.  I'm sorry to hear of your mother's serious illness, and for the extenuating circumstances that make this situation especially sad.  You have your hands full--but your mother and siblings are blessed to have you.  I will do my very best to answer your questions or find sources in the UK for those things I might not know or feel confident in answering.

Hospice as nursing and medical care at the end of life differs little from one culture to the next.  The UK and the US have much in common culturally, so nursing care, and especially hospice care, are going to be very similar.

In the US, however, one rarely goes to a hospice unless it is to stay there, and only then if there is no home for the patient.  Most receive their care at their home, or in a nursing home if they live there, or sometimes in the home of friends.  I have actually had two patients who had no family but who were fortunate to have friends who loved them that much.  I'm not sure I could do that!  It sounds as if your Mum goes to be evaluated for pain and comfort, to receive medications and to talk about her concerns, and that when she is no longer able to get around, she can go to the hospice and stay there until the end, and they will care for her.
Your questions are excellent.  However, as much as you want to prepare and protect your siblings, I hope you yourself gain some comfort and reassurance from knowing as much as you can about what is to come.  You have a tremendous opportunity to help your siblings prepare for and experience your mother's passing--but you are one of her children too, and you must be vigilant about your own needs.  Taking the best care of yourself lets you be most available for your siblings.

You are right about one thing, it is almost impossible to predict exactly how things will go.  I'll try to answer your questions one at a time....

- How is she actually likely to die? I don't really understand how cancer generally ends your life?  Cancer causes death by taking the place of the healthy tissue, so that the organs can no longer do their jobs.  Tumor can also cause problems and eventual death because they are bulky and they push on healthy tissue and organs.  This is also how cancer can be painful.  There are plenty of medications to relieve pain at the end of life, and also medications to ease anxiety if and when it become difficult to breathe, for example.

- How quickly will she deteriorate? At the moment she can still walk around and communicate etc.  We have arrived at one of those "everyone is different" questions.  From your description (except for her continuing to walk and talk), I would have thought she was already quite deteriorated. She will become more and more tired, and she'll sleep more and more.  Since the cancer is in her brain, she may have headaches that get worse and worse, and she may lose her vision or hearing, or be unable to speak, or if she speaks, she may not make sense.  These details depend upon where in the brain the tumors lie.  But generally, she'll sleep more and more, and eat and drink less and less.  You must always assume that she hears you and understands you--sometimes it seems it is not possible, but we cannot know.  We must therefore assume she continues to hear and understand.  This works out well for families--you can and should talk to her and give her the best encouragement and love you can.  You can talk to her (even if she cannot respond or even indicate she understands) about happy memories, how much she is loved, that it is OK for her to go whenever she is ready because the boys will be safe with you, those sorts of things.

- How conscious/aware of things will she be at the end?  We assume people are aware until they are dead.  I assume even for an hour or so afterward that there could be some awareness--not that I have any evidence, but because, if it were me, I would want to hear sweet things as life ebbs away.  Sometimes we see grimacing, as if there is discomfort, so we give more pain medication.  She may not be aware, or she could be very aware.  An aunt of my husband's was quite aware right up until the end.  Her children were around her, she was talking quietly to them, saying she'd had a wonderful life, closed her eyes, took a breath and was gone.  I have had other patients who essentially slept the last few weeks of their lives.

- How much warning do you usually get that death is imminent?  There are signs that death is coming.  Little interest in food and drink is a big one.  Variations in vital signs (temperature, heart rate and rhythm, breathing patterns) can indicate death is coming.  Circulation gets worse and worse, and so sometimes there is "mottling," where the color of the skin is bluish and pale-ish, in an uneven pattern, because blood is not circulating efficiently.

- Will she stop eating and drinking?  She may.  In any case, families are often disturbed when this happens.  It is important to remember that above all, at death we ought to get our way!  So offer food and drink, but do not push.  If she has a request, do your best to honor it, even if it might be a "no-no."  I had a patient who wanted a beer at the end but thought she ought not to have it because she was dying.  I can't think of a better time to enjoy a sip of beer!  I had a friend who wanted watermelon in January, when she was dying.  I looked for it but of course could find none.  I wasn't yet a nurse but now I suspect that even if I'd found watermelon, by that time she would not have wanted it.  Best to try to honor requests and understand that people change their minds.

- What drugs is she likely to be given and how will these affect her?  In the US, morphine is the usual medication given for pain, and it is given under the tongue because it is quickly absorbed and does not involve hurting the patient by using an injection.  There are also medications for anxiety--in the US we would use haldol and a benzodiazapine like valium or xanax (unsure whether the names would be the same in the UK).  There are also medications to dry up secretions if she should have difficulty with too much moisture in her mouth and throat, and medications for nausea, since this can be a problem if the tumor in her brain is near the place where she might be stimulated to feel nausea or to vomit.  There are others, but these are the most common types of drugs.

I think it would be very important for your brothers (and you!) to be with your mother as she passes, if at all possible.  I think it would be helpful as well if there were a nurse or counselor present with a familiarity with autism, and hopefully the time to get to know you and your brothers well before your mother dies.  In fact, since she is able to communicate now, if it is at all possible, it would be useful for all concerned (including Mum), if a counselor could help you all say what you need to say to each other.  

Please never apologize for asking questions.  I only wish I was nearer by, since communicating via the internet is so impersonal.  I hope over time that you will feel free to write to me again, as often as you need to.  Don't worry if you ask a question more than once, and ask me anything.  I'll always do my best to give you what I know....

I am not surprised that you are feeling overcome.  Of course you are!  This is your Mum, and you are getting ready to lose her, and at the same time, trying so hard to take care of your brothers.  May I offer you this, even though you have not asked: you must cry when you feel the need.  You need to give and receive hugs.  Cry with your Mum--she's not at all happy to be leaving at this early date, I'm sure.  But together, you can share your grief, you can express your love for each other, and you can each be reassured by the other (and your brothers can get in on this as well, as much as they are able), of the things you want to hear and say.  Many people (including myself) believe that death is a temporary separation.  If this fits with your beliefs, then tell your mother you'll see her when it is your time to come.  These kinds of communication (including the hugs and tears) will help all of you manage through this time.

You are so very welcome, and you remain in my thoughts and prayers!

xx,
Christine

Hospice Care

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Christine Johnson

Expertise

I can give suggestions, encouragement and direction on what hospice is and is not, when it is appropriate, and how to go about getting it. I am familiar with Medicaid and Medicare hospice benefits. I can answer general questions about disease process, what dying looks like, how hospice handles pain and other symptoms, what to expect from a hospice when end of life nears. I can provide support, direction and encouragement related to spiritual matters and psychological matters related to death and dying.

Experience

I am a certified hospice and palliative care nurse, and have been the director of nurses for three hospice centers, under two different companies. I have also worked as a contract hospice nurse for a large American hospice company. On a personal level, my father died without benefit of hospice (it was not popular then). I have taken care of dying patients in hospitals and recognize that for most of us, it is preferable to die at home (or in our residence, wherever that may be), comfortably and without anxiety. Also I had no support when my father died; hospice clients are the whole family (however that is defined by the "patient"), and support is provided at least a year after the patient passes. These are the sorts of things (and probably others) that I can help with.

Organizations
HPNA (Hospice and Palliative Nurses Association)

Publications
none yet

Education/Credentials
Registered Nurse (TX), Licensed Marriage and Family Therapist (TX) ADN Nursing, Excelsior College, Albany, New York (2004) 4.0 GPA BA, Psychology (minor Social Work), Oklahoma University, Norman, OK (1986) 3.67 GPA MHR (MA) Human Relations, Oklahoma University, Norman, OK (1988) 3.5 GPA

Awards and Honors
Phi Beta Kappa (and others)

Past/Present Clients
Unable to name as this would violate their privacy (and HIPAA....)

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