Life Support Issues/Colon Cancer Stage 4

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Question
Hello Betsy,
My Husband is 46 years old and was diagnosed with Stage 4 Colon Cancer in September of 2015. It had already metastasis to liver. Surgery was done to remove cancer from colon and he had a resection done. My Husband started Chemo in October-2015 but it didn't stop Cancer from spreading as we had hoped. His last scan showed nodes
on both lungs and lymph nodes involved as well. In the past 3 week he has fluid drained from abdominal area first drain-3 liters, 2nd drain-3.9 liters 3rd drain-5 liters. The fluid also causes extreme pain. He states that he can feel fluid build up again just a few hours after procedure has been done. I've heard that this will increase in frequency and that it also will cause issues with other organs shutting down. He states he doesn't want to leave me, I told him him "It's Okay" even though I'm just devastated and heart broken at the thought of losing him. I don't know what to expect in the coming months (?) or days(?) . My Husband can still go to bathroom himself and get up and get a drink etc. He is in severe pain when moving but, remains very head strong. He says he wants to continue Chemo if Dr. Will let him. He was unable to get last treatment because Immune system was wiped out. My Husband has other issues such as history blood clots (PE 2011) diabetes and high blood pressure. I know I'm all over the place with his history and diagnoses. Please forgive me. I'm just overwhelmed. My question is since the fluid is increasing, does this mean he is going to pass soon? I'm so scared and don't want to suggest Hospice as I feel it will break him from continuing to fight this horrible Cancer. He wants to continue to fight for everyday he can get. I want the same but, the pain he is in at times is so bad. Thank You in advance for any advice you can give us.

Answer
Kimberly,

I am so sorry that this has happened to you and your husband. Let me address each question you have asked.

Yes, the fluid build up is significant. Each time it is removed it does affect his body organs.

Sometimes patients think they must endure pain and that refusing to take adequate amounts of pain medications will help them to live longer, but this is not the case. Poor pain control affects the immune system and their ability to fight. So adequate pain management is a must. He needs to have his pain managed BOTH when he is immobile and when he is moving. Make sure that his oncologist has an accurate picture of the intensity of his pain.   

He sounds appropriate for hospice care. The paradox about hospice care is that research has shown that patients who received hospice actually lived longer than those who do not get hospice care. Hospice care should not affect his ability to receive chemo or radiation if he will derive some benefit it terms of managing his symptoms. Right now you both are under terrible amounts of stress. You both would benefit from emotional, spiritual and physical support. However long he lives, be it months or years, the quality of his life will be determined by this support. You don't have to do this alone. The decisions that you make in the coming weeks and months will be important. Hospice discharges about 5% of their patients each month because the patients actually improve with good symptom management and with support.

If he is not appropriate for  hospice care, an alternate solution is palliative care. Most palliative care teams are affiliated with a hospice. The palliative care physicians have special training in symptom management They can help you to understand what can be expected in the coming months.

Of course you are distressed. This seems to be happening fast and you watch him being in pain each day. He sounds to me like he may have some time. Get that pain under better control. My experience with young cancer patients is that their decline is marked by increasing weakness and worsening symptoms. Try not to view hospice care as "giving up" but rather as adding to the care he now receives from his cancer care team. Hospice provides 24 hour nurse visits. You need a partner to help you sort things out at home. Keeping him out of the hospital is important. He will be exposed to infection in the hospital. The routine hospice nurse visits will pick up on any changes in his condition and address his needs before they escalate out of control.

The future is hard to predict. If he survives this, everyone will be grateful. If not, you want to be able to look back on this period of time and know he was comfortable and your lives were peaceful.  

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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