What can I do help my brother, who has terminal lung cancer and refuses hospice services?

5 answers | Last updated: Mar 06, 2017
Martha clark scala asked...

My brother has terminal lung cancer. He was given appoximately six months to live. He recently sold his house and has to be out soon. He doesn't want to move in with his daughter who lives hours north. I am 12 hours north of him. He really is not informing either of us of the real situation with his medical appointments. He refuses hospice and is now wantsto live in a travel trailor in a county park until he can no longer get around. He wants to just go through everything without hospice. I have tried to explain that this will be very hard for him and that there is palliative care. He just will not listen. Right now I am concerned about where he can stay. He is also a veteran.

Expert Answers

Martha Clark Scala has been a psychotherapist in private practice since 1992, with offices in Palo Alto and San Francisco, California. She regularly writes about grief and loss, the necessity of self-care, and substance abuse. Her e-newsletter, "Out on a Limb," is available to subscribers through her website.

This must be an incredibly difficult situation for you and yours. It sounds as if your brother is quite adamant about not wanting to be a burden to anyone in his final months of life. It also sounds like he has made these decisions based on how he feels, both physically and emotionally, at least right now.

What remains to be seen is whether he will be inclined to modify these decisions once the more debilitating effects of lung cancer start to occur. He may feel very different in a few months; it is important to allow him to have his process with all of the information he is forced to integrate.

Hospice care is not just provided in the home. Maybe your brother would be more open to the hospice alternative if he knew that in some areas, there are hospitals or hospice guest houses that provide an alternative to hospice care in either his or his daughter's home.

To locate possible alternatives for your brother, you could do an Internet search for "hospice care," add the location in your search, and see what comes up. It might take some calling and researching, but maybe it will yield a solution that your brother would like.

Since he is a veteran, the other avenue to explore is what might be available to him through the Veterans Administration. You could initiate a search for information via the V.A. website or the National Hospice and Palliative Care Organization which has a specific page devoted to hospice care for veterans.

These ideas and suggestions are merely that: Ultimately, your brother will decide how and with whom he will live his final months. The only reason he shouldn't be the person to make the decision would be if he were deemed unfit to make it.

It is also possible that a good friend or a fellow veteran might convince your brother to choose an option more aligned with your family's wishes. If you or others in your family know of someone your brother really trusts or looks up to, you could appeal to that person for assistance. The disadvantage to this idea is that it could further alienate you from your brother if he ends up being unhappy with your actions.

Finally, if you disagree with your brother's decisions, it is appropriate to respectfully offer your opinions, and even to offer hospice or other housing alternatives.

However, if your brother remains firm in his course of action, your grieving process once your brother is gone is likely to be less difficult if you make an effort to respect his decision, honor his choices for the remainder of his life, and share a loving farewell.

Community Answers

Dawn's delima answered...

I was a caregiver as a profession for years and recognized my husband's cancer right away. He began losing weight quickly, the tests were done, the prognosis was Stage IV brain cancer at age 81. He had radiation first, and then chemo by pills, a new program. He rapidly declined and broke out in hives all over his head, face and back. We stopped the chemo pills and he got better but not completely. I requested a hospital to care for him and get him back up on his feet. He fell many times, unfortunately. He was released onto Hospice and he passed away at home as I took care of him and the Hospice people advised me by phone and came in 2 or 3 times a week to help. He was better off with Hospice and they helped me with knowledge and decisions I had to make. I had lung cancer and am a survivor almost two years. His was more serious and it was a Melanoma and he didn't make it.

Peterfmerlin answered...

Having been a primary caregiver for 6 of my friends and 1 cousin I can not say enough about how intrusive hospice care is. I can also not say hospice is anything but a trauma for EVERYONE involved. My life partner of 34 yrs will be going in a ?? of months but we have patently decided to say NO. The only thing hospice will offer is morphine. Which is NOT always enough to keep a person out of pain. If you do NOT die within the 6 month period hospice can and does quite often kick you out. Reason: FAILURE to die. If the patient is on liquid morphine at the time they make that decision they will withdraw ALL meds to get the patient into a nursing home = horrific pain and dt's from the withdrawal which they will ignore will no regard to the patient.Then you best be VERY careful as you will be truly on your own. The staff of hospice that will invade your home in every aspect can/will be. FAR too many nurses, forced "social worker", clergy - even if NOT requested or specifically request to NOT be a part of it. The caregivers that come into bath a patient. If a hospice worker is a bigot and a prejudiced pig they can cause all kinds of trouble for your partner and you. They can force a patient to a hospice house under the guise of "pain" control" (watch out BIG TIME if that happens as your loved one will NOT be alive for very long) with total disregard to the legal aspect of a persons surrogacy or power of attorney and if you challenge them they can/will trump up charges against the primary care giver that can/does ruin innocent peoples lives with no concern or thought for the care givers future. Hospice can and does over dose people with great intent to get the patient off their bill quite regularily. No other reason. To sum up my opinion: creepy uncaring legal killers with the intent to ruin peoples lives. If you try to fire them (which you can do) they will go for you in any capacity to get back at you for trying to do so. NOT EVER again in any situation. ABOVE ALL, have a very good eat em up lawyer to fight them. Oh and you can sue staff individually and report them for illegal practices. Nope, nope and NOPE again! Or at least with gun loaded and on my hip! Loathe comes to mind.

A fellow caregiver answered...

Very sad Peter. I have worked in hospice for many years after the passing of one of my beloveds. It sounds terrible what you went through. I do not know what hospice you used. I agree some are just horrible. I took hospice as an honor and a privilege. No, we didn't kill anyone, we just managed symptoms with the appropriate medications. I am so sorry you had to go through this experience and to add grief to grief you had a terrible hospice. Hope you are doing much better.

Jacqbur7 answered...

My husband is dying of liver cancer. I wish I would have read these forums before I allowed hospice into our home. I do not allow the hospice nurse to give him morphine, I only give it to him when he requests it. I feel "rushed" that the hospice nurse wants to see him die. His brothers and sisters want him to go to the hospital and have his body "flushed from the toxins." But he is tired of the needles, tests, and doctors. They have told him there is nothing more they can do for him. He cannot rest in the hospital. There is someone always coming in wanting to do something to him. He would rather be at home. They are all in denial and I am the only one respecting his wishes. If and when my husband dies, I want it to be by natural causes, not because he is overdosed on morphine.