Palliative Care, who - what - why & when explanation needed

Palliative care is NOT hospice care. You need to know what you are actually seeking.

Hospice care is end of life care, generally initiated when the life expectancy is 6 months or less. Palliative care differs in that the purpose is also to provide relief/comfort care and improve quality of life for the patient and their family WHILE the patient is still undergoing treatment. With hospice care, treatment is stopped and it is only that relief/comfort care that is provided.

I am so sorry you are having to face this. It is hard to learn your parent does not want to continue. It is hard to let go of your own feelings and consider his. Many men seem to want to avoid the hassle of treatment and pass on. Many times they are lost without their wife, or are tired of fighting.

It sounds like your doctors feel there is still a lot they can do for your father and they do not feel he is at an end of life situation. Hospice is not the answer. Pallative care does not necessarily end in death. It pertains to keeping the patient comfortable. So neither are the answer. If he persists in wanting no treatment and wants to join your mother, the doctors might require psychiatric evaluation and counseling.

You and your father need to have a comprehensive discussion as to what he is asking for. Refusing treatment is a serious step and may cause your father to undergo such pain as to be screaming in bed with it. My mother was unconscious due to the amount of morphine in her but still screamed when they had to re-position her every two hours. You do not want your father to go through that if it is possible to get treatment to keep it from happening.

This means not letting the cancer having its way. When the cancer spreads to the bone the pain becomes un-treatable after a while. (This is supposing he has cancer.) Other diseases also cause major pain at the end that becomes so severe that drugs will not help. There are also other considerations to no treatment such as lack of mobility, loss of bladder control, etc. If he is wanting a disease to take him away, it may take a long time. Get his permission to talk to his doctors to see what he is facing if he denies treatment. Chances are it is not an easy death but a long, painful and undignified ending. Make sure he understands this.

Again, I am so sorry you are having to face this.

Hi Chips, this is a pretty clear explanation of palliative care versus hospice care. Palliative care is not the same as hospice and does not mean “giving up” or “going home to die.“ Palliative care can be used together with treatment for a life limiting disease and it’s goal to to provide all types of comfort to the patient. It can include treating physical symptoms and side effects of the disease and treatments, emotional and spiritual support and so on.

medlineplus.gov/ency/patientinstructions/000536.htm

Please make sure your dad has a medical directive that is specific in what he would accept for care and what he does not want.

I wish you the best at this difficult time.

I do not have experience with Palliative Care with the elderly. I do know some about Palliative Care. My (then 17 year old) daughter was put into Palliative Care 5 years ago and she is still here and is currently stable.

I am so sorry you are going through this. It must hurt so much to see him like this. I hope you can reach out to the doctors for help with his mental/emotional state.

I assume some are mentioning Hospice Care when you are asking about Palliative Care because many (inaccurately) think it is the same thing. I am certain they are well meaning and just have an incorrect idea of what Palliative Care is. SaveSave

Hi when my mother got discharged the next day the local health authority sent a palliative care nurse to the house and was available 24 hrs a day. They came at 2 am once. She came and brought good drugs with her. She taught me how to do the ostomy pouch and everything and she was amazing. This was palliative care as we knew she wouldn’t die for a few months. Hospice also has a nursing team that go to the house and they also were called. They had even stronger drugs and taught me how to use a Fentynal patch so my mom wouldn’t pick it off. I still have someone’s number in my phone!

I would be fighting for my dad to live if there were treatment options. That is what *I* would do. If there is any hope 83 isn’t that old. Having been through it recently I know I will do what I can to keep him alive.

Good luck. This is the worst part in an adult child’s life. 😢

I did not see if you said your father lives with you or in a care facility.

I have no experience with the latter, but if he is living with you or in his own home he would qualify for the hospice portion of hime health under medicare. We had home health come in when my mom's dementia started getting wirse, although unbeknownst to us, she qualified much earlier.

Her dementia diagnosis actually qualified her for hospic much earlier as well. The HH nurses just never sat us down and told us it was an option. The main difference is she wouldnt have had PT or OT or anything like that, but a nurse would have come by more often and her personal care aide would have been more often as well.

One of the hospice nurses said she had a gentleman who had been in hospice care for a couple of years. A Dx of dementia or Alzheimer's qualifies because there is no cure.

Im sorry you are having to go through this, caregiving is not easy. Thank you for taking care of him.

Hugs. I'm so sorry.

I mention hospice because you also mentioned your father wants to meet your mother in heaven as soon as possible. To me, that does not sound like someone who is interested in treatment which may prolong life.

My experience with palliative care is in the setting of stage 4 breast cancer in women and men who are actively living their lives, most working full time, etc. I have worked on projects on a national level developing resources to help expand the breadth and depth of palliative offerings.

Either way, you can look up palliative care physicians and groups in your area and connect with them. Whatever hospital he has used is likely to have a palliative care team. If he has an internist, family practitioner, or oncologist, they can connect him as well.