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Hospice Care/Step-father recently passed, and consumed with questions.

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Dear Christine,

I found you by doing a google search on questions I had concerning hospice care and end-stage cancer.  I am hoping you can help answer some things that have been consuming me since my step-father passed on January 24, 2013.  

I will give a little back story.  He had prostate cancer which metastasized over the course of a year. The final advice came from his oncologist on New Year's Eve and he began at-home hospice on 1/2/13.  He spiraled downward so fast up until the day of his death, it still doesn't seem real.  He had cancer treatment but I'm guessing that the oncologist determined there was nothing more to do to help and suggested hospice.  

As with any cancer patient, his pain was excruciating.  The last treatment he had was for radiation therapy to alleviate the pain in his pelvis and legs.  After that treatment, whether it was a coincidence or not, he began having some neurological problems (eye drooping, loss of the use of his arm as if paralyzed).  The underlying question we had could this have been caused from the radiation?  He was fine prior to treatment.  

One of the things that has been lingering in my mind and something I just can't forget is the night he passed away.  I went to stay with him and my mom when things got really bad and I stayed with him at night so my mother could rest.  The night he died, I had his medicine laid out but since he was resting what seemed to be comfortably, I didn't want to wake him up.  I laid back down to get some sleep and woke up because I noticed his breathing change.  It wasn't the 'death rattle' that people speak of, it was more that his breathing pattern changed and it got lower and lower.  At that point, I sat up and just listened and he was quiet and not breathing.  I went over to him, spoke to him, held his hand and laid his arms on his chest before waking my mother.  It was at that point, I noticed two tears in the corner of his eyes.  One eye was closed, but one was somewhat open (I closed that manually and wiped away the tears).  I cannot get that image out of my head because I don't know if it was sadness that he felt and it was actual emotion, or was it just part of the dying process.  I also have guilt that when I heard his breathing change, that I didn't get over to his bed sooner.  I knew the time was coming, I just didn't think it would happen that quickly.  Although I was there with him when he drew his last breath, I wasn't holding his hand at the time or offering comforting words and I feel such guilt about it.

There is something else that I wondered about during this time and that was when he was 'out of it' and not speaking or interacting, was he still able to hear us?  There were times I felt like he acknowledged what was being said by a grunt, but I guess I want to be reassured that he knew what we were saying, he knew he was loved and he knew we told him it was ok to let go.  

I know this message is a bit long, and I could actually write so much more.  Cancer is such a vicious disease.  It takes away everything from a person - their health, their dignity and pride. I commend you for doing what you do, because I saw firsthand how compassionate and caring the hospice nurses were to us. The care was truly all about the patient.  

If you could offer any insight, I would so much appreciate it.  Thank you.

Answer
Dear Margaret:

I am so sorry for the loss of your stepfather.  I'm glad you've written, and I'll try to answer your questions.

People are eligible and appropriate for hospice care as long as six months from the time a physician believes that, without curative treatment, their disease will end their lives, as long as the patient no longer wishes to pursue efforts aimed at cure.  Many people have difficulty making the decision to seek out quality of life rather than quantity, and see accepting hospice as "giving up."  So there are those who do not come to hospice at all and some who come as soon as they are eligible.  I once cared for a woman for six hours before she died--she had had radiation and chemotherapy for her breast cancer the day before.  I am heartened to know that your stepfather's physician considered hospice to be a helpful resource for him.

Pain can be managed whether care is toward cure or strictly comfort and symptom management (i.e., hospice).  There are many medications which can be given to manage pain while chemotherapy and radiation are applied.  I'm so sorry that it seems your stepfather did not receive adequate pain management while he was so ill.  Radiation can be useful to help manage pain and would not have kept him from receiving morphine or (my preference) fentanyl patches.  While it is possible that the neurological symptoms were related to the palliative radiation, that seems unlikely.  It is also possible that there was tumor growth or a clot that lodged in or around nerve tissue that could have caused the changes you saw--although prostate cancer usually metastasizes to bones, lungs and liver, and not to nervous tissue.  Sometimes symptoms develop and there is no good reason for them.  If searching out the cause can make for better quality of life for the patient, it's a good idea to do that.  But it sounds as if his illness was very advanced at that time, so I would not have expected efforts to be made to try to make sense of those changes.  Usually those kinds of changes would have been managed as symptoms, so that he was comfortable.

I get questions frequently about tears at the time of death.  Some people are rather dehydrated at that time (it's not a bad thing, it is a normal part of dying for some people not to want to drink or eat).  The presence of tears suggests that his eyes were well moistened, and that must have been comfortable for him.  At death, muscles, even tiny ones like those around tear ducts, stop doing their job.  Urine and stool sometimes come out, and tears can as well.  I do not believe they are ever about sadness.  It is physiological, rather than emotional.  And even if it had been emotional (there's really no way to rule it out entirely), who is to say that those tears weren't tears of overwhelming emotion, of love, of feelings welling up because he felt so close to you.  I would put my money on that, rather than sadness or grief on your stepfather's part.

I understand you feel you should have done more.  Let me just say this--no one knows the exact time that someone will die.  You were there, next to him, and he knew that.  He had to be aware of your presence, since he was still recently well enough to take medication.  From your description of his breathing pattern, he died very peacefully, literally just slipping away.  It is clear that he achieved what we all wish for: a peaceful death without pain or anxiety.  You were wonderful to him and, I suspect, to the rest of your family.

It is thought that hearing is "the last sense to go."  I encourage people to continue to talk to their loved one even after breathing and heart beats have stopped.  There is no way to know how long it takes for the brain to stop working--I assume they are still there long after it is pretty likely they are not, at least in the sense most people think of "being there."  On the one hand, I do not know and I will never know, whether these individual patients can still hear us, but I believe in erring on the side of the chance that he could hear.  If the patient cannot hear, then nothing is lost.  If they can, then they can hear the loving words said as they ebb away.  My other reason is, people benefit when they say soothing things to someone who is dying, and the things you said were exactly what I would have encouraged you to say.  I have no doubt that he knew he was loved!  If you were getting any response, even a grunt, you were getting a response.  He heard you, he understood you and he loved you.

Your message is not at all too long--it is as long as it needs to be.  We have plenty of time, in fact, if you want to write again, I'll still try to help.  I am, virtually, always here.

Cancer is pretty vicious, I agree, but in my opinion, any condition that results in debility and death is both vicious and noble.  I do not mean to be unkind or insensitive.  We all die.  Sometimes we have a chance to deterimine how we will die.  While cancer is mostly a slowly developing disease, that slowness allows for treatment, for reconciliation of our own concerns and with relatives, and to have a hand in how it will all end.  

I hope I have been helpful. Your stepfather was a fortunate man to have had so loving a daughter as you.  The guilt you feel is part of grieving.  Take care of yourself, allow yourself to grieve and to cry, remember your stepfather--you may find yourself laughing at times.  It's all part of the process.  Someday, you'll see him again (to my way of thinking), and then he can tell you for himself how wonderful you were to him.

Take care,
Christine

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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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