Life Support Issues/lymphoma, end stages

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Question
Hi Betsy.  

My husband was diagnosed with lymphoma last September.  We had discussed this many times over our years together and I was not surprised that he wanted no treatment.  In February his doctor told him he had about a year, but he's lost a lot of ground just since then.  He has begun sleeping about 20+ hours a day and refuses most food.  He still drinks water, Gatorade, apple juice, and tomato juice, but in more limited quantities than before.  He has lost about 65 pounds since August.  He says he is in pain, but falls asleep before I can get a pain pill into him.  He gets up in the middle of the night (3 or so) and then sits on the couch until bedtime again.  He isn't having the death rattle I've heard about, but his breathing has been shallow since last August.  We have been told the lymph nodes in his chest and groin area are completely involved as well as his entire spleen.  But that was last October when he had a PET scan.

Since his immunity is so severely compromised, we let no one in the house.  All groceries are quarantined and then washed by me.  I wear protective clothing to shop and strip when I get home.  What I'm saying here is that there is no Hospice now, nor will there ever be.  We've gotten through so much just the 2 of us, we won't stop now.  My question is, with the information I've provided, do you think he is near the end?  

Thank you so much for any thoughts you can share.  This is the most difficult thing I've ever had to do, but I'm sticking it out no matter what.  He's my Best Friend.

Mary ~

Answer
Mary,

You are very brave.  Let me answer your questions one at a time.  If he is able to get up and sit on the sofa, he is not likely in his final days.  Most patients in the final days are so weak that they are unable to swallow or get out of bed. Weight loss is expected and you are doing the right allowing him to choose what he wants to eat or drink.  Keep in mind that when his liquid intake turns into “sips” of fluid and he is taking less than 8 ounces in a day, his kidneys will likely fail and you will be down to your final days. It is part of the dying process; I am just trying to provide you with some time frames.

Your efforts at protecting him from infection are very good. Some patients do die from pneumonia despite your best efforts. Both ill and healthy people aspirate their own saliva in their sleep.  Saliva that contains bacteria.  The healthy people are able to cough up whatever enters their lungs during the night but the weak and ill are not able to do that. So despite your very good efforts, he still may develop an infection.  Remember that prior to the discovery of antibiotics, pneumonia was called “the old man’s friend” because it promised a swift death.

Your husband does sound like he is in pain.  People in pain will sleep but they sleep poorly because they are in pain. Waking up in the middle of the night can be due to pain and/or depression.

The first thing I would do is put him on a schedule of pain medications. Most short acting pain medications (like Vicodin, Oxycodone or liquid Morphine) work for 4 hours and maybe longer. The higher the dose, the less often he has to receive it. Maybe starting to give it every 4-6 hours and see how he does.  If he can give you a number to rate his pain (“0” is no pain and “10” is the worse pain possible), that will help you to know how well the medication is working for him.  Even though he is only taking liquids, you should give him something to prevent constipation as the pain medication will cause constipation.  Senokot (get the generic over-the-counter one) works well.  

You need to be thinking ahead to make sure that you have what you need for him as he changes.  I understand your wanting to do this yourself, but the beauty of hospice is that they have all the emergency and nonemergency things you may need in the days ahead. If your husband has Medicare, everything including his medications, oxygen, adult diapers is paid for. Hospice also is mandated to do things your way! Planning for his decline is the key to him being able to die at home. Going to the emergency room in the middle of the night is distressing to both patient and caregiver.

So thinking ahead. You will need to have some sort of pain medication that you can still give to him when he is too weak to swallow.  There is liquid Morphine that is given under the tongue. The beauty of Morphine is that it also works for shortness of breath. Many patients develop shortness of breath in the final days to hours.  Some patients develop agitation. There are different medications to treat the agitation depending on the cause of it.  It is helpful to have adult diapers in the home for the time that he is unable to tell you he needs to use the bathroom or is too weak to get up out of bed.

I hope that this has not been too much information. It sounds like you are doing a stellar job in caring for him and he is very lucky to have you there. From your description, I think there is some time ahead. Control of his pain is the priority now so he can rest better.  

Life Support Issues

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Betsy Murphy

Expertise

My expertise is in end of life care for adults. Identifying when someone is approaching the end of their life. Benefits and burdens of end of life treatments. Managing pain and other symptoms. Providing care for dying patients at home. Advocating for someone who is dying in a hospital or nursing home.

Experience

More than 28 years of experience in hospice care. Currently consulting with hospices to promote access for patients to receive hospice care earlier in the course of their illness. Betsy provides training for hospice marketing staff to effectively work with nursing facilities to help identify eligible patients. She writes Additional Development Request (ADR) letters to Medicare to help hospices get paid for their services and to avoid future claim denials.

Organizations
Hospice and Palliative Nurses Association

Publications
Articles: Clinical Reviews, Advance for Nurses, Nursing Spectrum, Washington Business Woman, www.Ezine.com;www.alz-nca.com.Books: Understanding Medical-Surgical Nursing (FA Davis and Company), Guide to Caregiving in the Final Months of Life (TM Brown publishers).

Education/Credentials
Bachelors of Science in Nursing, additionally trained as a Family Nurse Practitioner and certified as a hospice and palliative care nurse.

Awards and Honors
Outstanding Woman in Loudoun County (VA) by Loudoun County Commission on Women 1997 and 2002.

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