Hospice Care/Terminal Cancer

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Question
Well I don't know where to start, but I do hope you can help me with this question, I lost my right eye due to metastatic melanoma, now I have been told it has spread to one of my kidneys and also liver, and possibly my prostate due to this I have been told that the only treatment that is available to me is ipilimumab what ever that is, this is not funded in NZ and would cost me $150,000.00 and I have been told this would only give me a 10% chance of helping me.in short without this treatment my life expectancy is 12 months or less. So now what I would like to know is if I don't go ahead with this option how will I die, will it be chocking or will I go senile or starve or what way will I go

Many thanks for you help
Kind regards E Browne

Answer
Dear Eamonn--

I am so sorry about your illness.  I have cared for a hospice patient who had metastatic melanoma.  I can tell you that it is possible to have a peaceful painfree death.  Between now and then, I hope you will do all the things you want to do, eat whatever you want, drink whatever you want.  The other kinds of things I should not tell you to do, if you want to do them, because with such a short time, you are not likely to have to face the consequences of things that may be illegal (they are here in most of the US--I don't know much about New Zealand and marijuana and such).  I have often said that I am behaving now, but when I am diagnosed with a terminal illness, I am going to try it all. Mostly, make sure that you reach out to and spend time with people who are close to you. Tell them how much they meant to you and let them tell you those things too.  All of this adds up to finishing your life in a way that you will find satisfying and significant.

OK. Depending  upon where the melanoma has spread, and how bad it is in different places at the end will dictate how the end will be.  I can tell you that my patient had it in her bone marrow.  So she was anemic and felt weak and near the end, she had little spots on her skin where she was bleeding in tiny places but by then her liver was also involved, and so she lacked the enzymes and other things to help her body not bleed and to clot where she did bleed.  The only discomfort she had was that she got where she just did not want to be turned in her bed.  She was a big girl, and she didn't have the strength to turn herself.  She did not want us to turn her.  I thought at the time (and I regret this), if she does not want to turn, she shouldn't have to.  What happened was, she quickly developed bedsores.  These were very uncomfortable.  Closer to the end, she had difficulty breathing, and she got panicky.  Before I could get her the medication to manage her panic (she was no longer my patient, management had assigned her to someone else), she went to hospital where she died within two days.  I do believe that she got very good care there, and that she had a peaceful death.

My advice to you, beyond what I led with, is that you should check to find a hospice company.  You have a little time to investigate and interview and find one that fits for you.  In the US, hospice starts when a physician says, we are not going for cure, we are going for comfort (palliation), and the patient's condition will likely end his or her life within six months.  It's OK if you live longer than six months while receiving hospice care; patients often do live longer than expected because of the extra care and the relief that hospice medications bring.  I did have one patient, a wonderful man, who so improved under hospice care (they even brought in a physical therapist!) that they discharged him from care and he lived comfortably for another couple of years before he went back into hospice and died.

If you were in the US, I could tell you more about your hospice benefits and how that all worked, but it is certainly different from country to country......  The care itself is usually provided not in a hospital or nursing home but wherever the patient lives.  Symptoms are managed mostly with medication. Nurses and other care providers visit the patient at home.  If there is family and friends, these are the people who will provide most of the care you will receive the closer you get to the end.  They will be taught and supported by the hospice.  Since hospice nurses cannot be there 24/7, and family and friends can be, you will have the best care from the people who love you most, surrounded by your own home and belongings.

I wish there was more that I could offer. Come to think of it, perhaps one other option.....  In the US, sometimes drug companies will provide a medication at significantly less cost, or there are clinical trials where the drug is being investigated for how it works on different types of illnesses.  I always figure that the worst thing they can say is no.  Investigate alternatives... Perhaps your pharmacist (chemist?)will know of such resources available in New Zealand, and can provide support as well.

I wish you the best.  I am so sorry for your illness but I pray for the best possible opportunities for you--for your life, for your illness, for all of it.

Praying for peace for you,
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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