Palliative Care

My dear mother-in-law has been diagnosed with colon cancer and has told us she doesn't want surgery or any painful or uncomfortable treatment. In fact, she doesn't want to see doctors anymore! We are planning to at least get more details about the cancer and prognosis with an oncologist soon, but assuming she doesn't change her mind, where do we find palliative care to keep her comfortable until she progresses to the point of needing hospice? I understand that oncologists are all about curing the cancer, and if she wants no treatment, we'll need to find palliative care elsewhere.

She is 85 years old and on a narcotic patch for several fractured vertebrae. She is active, ambulatory and cheerful, only beset by some annoying GI symptoms that have limited her outings. It's probable that the patch has masked any discomfort from the tumors. It's really sad situation, but we want to make her last months as normal and comfortable as possible. She is not ready for hopsice, but it seems to me that we'll need someone to help shepherd us through the disease's progress, and we would appreciate knowledgeable and thoughtful guidance.

The Cancer Society can help with all your questions, and will have a list of local, reliable service providers. They should also have a Support Line which you can call (if it's like ours, that's 24-hrs a day), either phone or online, for carer support.

Doing a very quick search I also found this page link: (below). I'm wondering if Robert (Rae? Roe?) may know more, as he seems to be the health and community services chap...

http://www.healthandage.org/hospices/South-Orange-NJ-city/healthcare.html

https://www.ourparents.com/hospices/new_jersey/south_orange

My Mom was diagnosed with stage 4 Lung cancer- she did not want to go through allot of medical intervention as your mom in law.

Some of her docs were adamant she see an oncologist but she knew it was a waste of her time and he would try to persuade her to "become a client"- they would literally call her and tell her she had to go and would book the appointment for her

Thankfully her general practitioner respected her wishes and prescribed hospice which was amazing to work with - they were compassionate, proactive in pain management and very supportive of her wishes and helping us deal with everything.

Sorry you are going through this, but hospice is just a fantastic resource !!!

The only thing hospice could not do was prescribe her medical marijuana, (they agreed it would help take the edge off and help with appetite) as they are federally funded.

Research everything thoroughly before it is needed. A relative had cancer and wanted palliative care. She was receiving hospice care at home. When her pain became bad enough that they couldn't treat it at home they said she had to be hospitalized to receive morphine by IV, they claimed this wasn't an option at home But since she was admitted to a cancer ward she wasn't able to see her grandchildren for the last few days of her life for fear of exposing other cancer patients to germs. They had a visiting room down the hall, but she was in no condition to be taken down there, so she was essentially cut off from her grandchildren.

It's too late (obviously) to change her experience, but I tell others about it so that they know to ask ahead about all options and facilities. Had her pain been better managed at home, or had she been admitted to a facility that did proper hospice rather than putting her in a ward full of people who needed to be shielded from germs because they were expected to recover, she would have been able to see her grandchildren instead of just pictures of them, which is heartbreaking since her grandchildren were her whole world.

spontaneous said:

Research everything thoroughly before it is needed. A relative had cancer and wanted palliative care. She was receiving hospice care at home. When her pain became bad enough that they couldn't treat it at home they said she had to be hospitalized to receive morphine by IV, they claimed this wasn't an option at home But since she was admitted to a cancer ward she wasn't able to see her grandchildren for the last few days of her life for fear of exposing other cancer patients to germs. They had a visiting room down the hall, but she was in no condition to be taken down there, so she was essentially cut off from her grandchildren.

It's too late (obviously) to change her experience, but I tell others about it so that they know to ask ahead about all options and facilities. Had her pain been better managed at home, or had she been admitted to a facility that did proper hospice rather than putting her in a ward full of people who needed to be shielded from germs because they were expected to recover, she would have been able to see her grandchildren instead of just pictures of them, which is heartbreaking since her grandchildren were her whole world.

Wow - I had a friend who totally got IV morphine at home, and if in hospice, not a problem my Mom got it and saw everyone - their role is to support comfort to the end and there is no cut off from family. Good guidance to ask as many questions as possible. My SIL is director of a hospice care facility (in another state) - so if you have any questions glad to reach out and ask her or connect you both.

To clarify, she was receiving hospice care, but was not in a facility that specifically did hospice, she was in a regular hospital because she was told that was where she had to be if she wanted adequate pain management.

As tough as it is, for reasons such as this it is important to ask a lot of tough questions now, and to also make sure the doctor is on the same level as you in regards to how you want to proceed.

Thanks all! We called hospice for my father in-law, but he only lasted 2 days at that point and suffered a great deal (advanced Parkinson's, late diagnosis of esophageal cancer) and we are determined to do better this time. Luckily we are all on the same page so far. Oncologist visit is next week and nothing is a crisis or rush like before.

NizhoniGrrrl said:

Thanks all! We called hospice for my father in-law, but he only lasted 2 days at that point and suffered a great deal (advanced Parkinson's, late diagnosis of esophageal cancer) and we are determined to do better this time. Luckily we are all on the same page so far. Oncologist visit is next week and nothing is a crisis or rush like before.

As much as you don't want to face what is coming down the road (whether it be in six months or in six years), now is the time to do it so that you don't have to make those decisions when it does become a rush or a crisis. Planning ahead now is key. Ask a lot of questions, how will pain management be handled, can IV drugs be given at home if needed. Will your insurance cover a visiting nurse, and how many visits a week. If pain management or care at home is not sufficient, what other options are available besides a regular hospital. And most importantly, is the doctor on board with any and all decisions and are they willing to back you up on this at a later date if your mother-in-law declines.

Having a very specific advanced directive is very important, but discussing this at length with family members is also important to make sure that your mother-in-law's wishes are followed. For example, my aunt had a very detailed advanced directive that the nursing home had on file, yet her daughter still had to fight the nursing staff because they repeatedly tried to go against it and insert a feeding tube, had her daughter not known explicitly what my aunt had wanted she might not have fought the staff on the feeding tube, which only would have prolonged her death and suffering.

Sadly, it's routine to disregard Advanced Health Directives, especially in emergency situations, because the argument (by medical teams who don't know the patient well) is that the individual may have changed their mind in the light of new information or conditions.

There is heated debate over this. And I'm horrified to say we're even being taught that certain first situations might necessitate disregarding DNRs. (It's as if some First Aid Councils have watched too many eps of Greys Anatomy and ER)