Cancer--end of life care?

Question

My husband has been battling cancer for about 15 months now. At the last visit the doctor suggested we start considering 'end of life' care. He is already in quite a bit of pain. I think we will be calling a pain clinic next week.

Anyone have experience with someone dying of cancer. We are young---36 & 38 with three kids under age 12. How much pain can we expect? What is the end like?

I just cant imagine watching him gasp for breath or writhing in pain. That is more scarey than death to me....

Answer 1

If your husband is complaining of pain, he is not recieving adequate pain control and needs to see a specialist in pain management immediately. In the Oncology world, pain is considered an acute crisis and a medical emergency and should be treated as such with aggressive pain control measures immediately. Once pain is out of control, it is very difficult to get the sufferer relief. You should see the pain clinic as soon as possible.
Hospice is an excellent source of support when you are beginning to think about end of life care. Hospice basically supports you, your husband and your children emotionally, physically and spiritually during this difficult decision making process. They assist you with symptom management without prolonging your husbands dying process thru further treatment of his disease. In order for this to occur, your husbands doctor believes he has less than 6 months to live.
Your husband can have a peaceful death with good symptom control and he will not be wirthing and crying out in pain or gasping for air.
I am a Oncology nurse and have worked extensively with hospice and helped manage pts in pain crisis.
I wish I could be of more help to you. Ask for a hospice consult from your doctor. You dont have to enroll, but I think they would greatlley benefit you and you children.
Prayers and peace to you and you family.

Answer 2

My thoughts are with you and your family.

There is no excuse for undertreatment of cancer pain, except not knowing about it. Start working on the pain issue ASAP -- his oncologist should help.

If you haven't hooked up with the nearest hospice type organization, consider doing so. They have a lot to offer, both to your spouse and you. I don't think anyone can tell you what the dying process will be like in any particular case but the Hospice staff can give you a great idea. (Note: While hospice can be a place, more than anything it is type of care focused on easing the end of life process. This care can often take place in your own home. They also help with the greiving process, etc. It is also important that you have the appropriate paperwork in order -- a durable power of attorney can be of great use to you.)

I have found that oncologists (especially with a terminal patient) tend to view proper pain management as one of the most important aspects of the patient care plan. Please pursue the issue agressively until both you and your spouse are satisfied. If this is a fatal disease, there is NO reason not to control pain.

This will probably be covered by the pain clinic but:
a) Some patients tend to tolerate one type of meds better than another (pure morphine vs. synthetics). Sometimes mixing in something that is an anti-inflammatory is also helpful).
b) Is the medicine being administered at appropriate intervals and dosages? (Some caregivers can skimp on the pain meds because they are concerned about potential adverse effects -- misguided, especially in the terminally ill, IMHO)
c) It takes way more pain med to control out of control pain that it does to keep it in control. This is an important concept in pain management. That is why some sort of steady state pain meds might be a good thing (i.e., a patch, oxycontin, etc.) with something else added for break through. Sometimes you can even take the break through meds prior to the pain spiking -- i.e., if walking is especially painful, taking some of thebreak through pain meds shortly before walking might not be a bad thing. (Is he his own worst enemy in trying to grit it out and thus allowing pain to get out of hand?)
d) Is there some cause of the pain that be mitigated in other ways? For example, UTIs can be very painful. Some patients respond very well to repositioning in bed as they have (or develop) sore spots.
e) Is there some way to distract your spouse? Some patients respond very well to music and others to touch or conversation.

I know this is hard but a few final thoughts. What are your highest prioritis over the next six months? How about the priorities of your husband? If you can discuss these with his doctors, they can best manage his care. Also, what are the limits of care? I find this of use: http://www.wsma.org/patients/polst.html

Answer 3

If it's ok one more answer to your question very similar to others except I was exactly you -my husband passed from cancer last year and he was young. It's funny I never knew a thing about hospice before his illness - now I can tell you it not only helped him intensely but also helped me and my family. A doctor is supposed to recommend you to hospice and it's not free but something that goes through our insurance or medicare. Also understand their are many hospices- I like the non-profit organizations best. They are there and want to help you- they say by time someone recommends and gets someone on hospice the average time they are used is 22 days, they want to do more for the terminally and be there sooner. Also if your interested he could be taken care of at a nursing home - the nursing home I work at has a hospice unit -with rooms set up comfortably for the patient and family and we are there 24 hours a day to care for the unpleasant things that happen as the illness progresses. It allows the family to stay as long as they like, whenever they want with alot of great accomadations to make this as easy as possible on you and your family. I did take care of my husband at home and with hospices' help I was able to work a few hours a day while they cared for him, they arranged for hospital equipment I needed, supplies, all his meds, checking his stats, etc. and if I had any problems, questions, or emergencies I could call 800 number 24 hours a day. I am sorry if I've gone on and on but if you want someone to talk to please send note I'll keep in touch with you. My love and patience to you.

Answer 4

My mom died of lung cancer 4 years ago. The end of life care is hospice. They were very good. I would recommend them. My mom was in a lot of pain even with all the meds they gave her and tehy her some strong stuff. I guess only she knew what kind of pain she was in. In her final days, she had lost so much weight, she weighed like 100 and her normal weight was like 160. She lost control of her bowels, on the day she died, she was coughing up blood and later we found out, it was also a part of her lung she was coughing up. WHen we brought in Hospice, they brought a hospital bed that we set up in the living room. SHe was on oxygen 24 hours a day. She died in her sleep one afternoon. I don't mean to be graphic, but you asked. Dying of cancer is not pretty. You didn't say what type he had. My mom lived 15 months from diagnosis, but when they found it, she was already a stage 3 going into stage 4. JUst do all you can do for your husband, be there in his final days. My mom never gasped for air, but she was in pain. I'm sure everyone is different though. I'm really sorry for what you're going through.

Answer 5

Hospices are excellent sources for pain management physical care and Emotional care and support and they come to the home you dont need to take your husband out its very exhausting
Hospice will guide you and your husband. Please call his doctor for a referral.The hospice nurse should see him either that day or the next after the dr calls. By the way there should be no cost to hospice ,pain medicines they provide and other ancillary needs he may have such as hospital bed .
There are many ways to get pain med even via oxygen mask they can give morphine without many of the side effects God Bless

Answer 6

No no please. its not the end.
One lady, Shailza, was having 3rd degree of cancer. All the doctors & topmost medical institutes had said its the End, but she defeated, yes, I mean it , She DEFEATED cancer & is now leading a normal life !
Human being is known to have utmost bound of energy , provided it is properly analysed & focused. One person lost his eyesight, completely at the age of 65 . One doctor attended him & he regained eyesight back after 5 years . What dist the doctor did ? Medication ? No . Treatment / surgery ? No. He only instilled positive thoughts in patient's mind & this wonder happened.
So don't get dispaired.
The lady , Shailza, has also recovered by doing Pranayam. It is said that if you do KAPALBHATI & ANULOM VILOM paranayams , 15 minutes each regularly, you can even defeat cancer .
Go ahead . Your husband can do it.
You can get more information TV / books / ypga camps of Swami Ramdev. Currently , AAstha chennel telecasts his techniques during 6-8 am in the morning, Indian time.
Our prayers are with you. He'll defeat cancer. People have done it in the past. Now its his turn.

Be positive . He'll be OK .

Answer 7

Sorry to hear about your husband's illness. I lost my mom 3 years ago to cancer. It was tuff, and it still is. She did chemo and radiation for a while, just go to the point the treatments were doing her more harm than good. We had hospice, they were wonderful, they will tell you what to expect and help control his pain better. Spend as much time as you can with him, each moment will be so precious. When my mom past I was right there holding her hand. I was so scared, but it was the most peaceful thing I have ever seen, she didn't gasp she just took one last breath and that was it. She told us that their were angels with her and she was going home. She talked about seeing her mom and sisters who had already past. Be strong your husband is going to need you and your children. God bless you and your family.

Answer 8

My dad died in the hospital (of cancer) in 2005. For the past 2 years I have been a home support worker (caring for people in their own homes). Some of us have taken additional courses in palliative care (not me...too scared) so that we can care for people to die in their own homes with dignity. I think just about everyone would prefer to die at home surrounded by loved ones and familiar things. A hospital is not very comforting and wouldn't you want the best for your husband. Try to get a specialized worker to come in and tend to your husbands pain management needs and other things too if you can't bear to do it (bathing, toileting, etc.). You will be better off in the long run knowing that you did everything you could to make your husband's last days the best for him.

All the best to you and your family.

Answer 9

First of all, you have my deepest sympathy and sincere prayers. I watched someone close to me die from cancer. It goes without saying that it is definitely not easy to watch someone you love go through this transition.

Its a hard desicion because a lot of the pain medication that they give seems to make them sleepy and just out of it so to speak.

I agree that Hospice is a excellent choice for someone suffering from a terminal illness. They were great with my loved one. They not only address the needs of the patient, but they also help the family to deal with watching this process.

Answer 10

A Hospice or Pain Clinic will make sure that he does NOT writhe in pain or gasp for breath. Be brave and God be with you.