Terminally ill parent - disagreement with siblings re. management

[BarkItOff]

Hope I’m in the right place here.
I was hoping someone could advise me how to manage the situation I’m in.

My mum is terminally ill, she’s got metastatic cancer and has for several years now. Recently she’s deteriorated a lot, the treatment prolonging her life is no longer working and we are having to face saying goodbye to her.

Sadly as part of her deterioration she has become increasingly delirious and generally doesn’t know where she is, what’s happening etc. This means me and my siblings are often having to make decisions for her.

The difficulty is we are not agreeing on those decisions. Recently her care team have broached the subject of a DNAR and asked our opinion. DB is strongly against it and wants to prolong her life at all costs, I feel maybe it’s time to consider quality of life and not just prolonging it. The doctors were pushing us to make a decision and so I ended up backing down and there is no DNAR in place. I really feel this isn’t in her best interest however.

We are going to face a similar scenario when we discuss end of life plans shortly also as DB doesn’t want her “drugged up on morphine” thinking this will cause her to pass sooner whereas I think the priority is ensuring she is comfortable.

There is no power of attorney or similar in place and she is divorced from my dad so it falls to me and my siblings. I’m the oldest but DB lives close to her so is more involved in her day to day care. My other DB lives several hours away and is happy to leave this up to us.

How have people handled situations such as this? I feel like DB is thinking I’m wanting to hurry her death along but all I want is to ensure she doesn’t suffer.

I feel for you all.
A DNAR only covers CPR, not life prolonging treatments, it would just mean that if her heart stops the paramedics wouldn't try to restart it.
I'm not sure how to advise you except to say that it would be cruel to withhold pain medication.
You & your brother need an open & honest conversation with the palliative care team who can explain everything to you both. Morphine won't hasten her passing (a common misconception) but it will make it more bearable for her.

This becomes a problem when a parent or adult child chooses not to speak about death.

My next of kin is quite clear about my wishes. It was not a conversation they were comfortable with, but given that death is inevitable for all of us, I thought I should bite the bullet and I should be clear what I wanted.

We are a strange people, arent we? Logically we know the older we get the more likely we are to die. Yet a lot of us seem to avoid the conversation that is needed, so situations like yours don't arise.

I'm sorry for your quandary and I realise nothing I have said here helps you, in your very uncomfortable position (should I do what I think is right, or what my sibling thinks is right) might make maybe one person realise they need to make their own wishes known sooner.

If you don't have power of attorney you can express your opinions but the decisions will be made by her medical team. So all you can do is keep expressing your views to them and hope that they will influence their choice. It is also worth asking your brother how much longer he thinks she will live and will he be able to have a conversation with her if his options are followed.

I think a DNR is the right thing when someone is on end of life care. My dad signed one, but we would have said DNR if we had to make that decision on his behalf. He was dying, and it was already hard and prolonged enough as it was. My mum’s friend’s brother was resuscitated when he was dying of cancer due to having no DNR, only to die the next time. I can’t imagine how awful that would be. Same for morphine - for me, dying a bit sooner due to the morphine but being comfortable is far preferable than watching a loved one suffer. I’d be having a difficult, but much needed honest conversation with my sibling to advise that they need to think of your mother and the quality of her life. Sounds like its a selfish standpoint and they do need to let that go.

As neither of you have POA over health and welfare, her medical team have the final decision and they cannot offer her treatment that is inappropriate or futile (like CPR), and they have to act in her best interests. Pain and symptom relief in the final phase are likely to be considered to be in her best interests.

I know this doesn’t help you deal with the disagreement with your DB right now, but it’s likely the decisions will be out of your hands when the time comes.

I can only say how sorry I feel for your situation…I have no answers but hope you can all pull together during this stressful time,

I feel for you. It’s difficult when some one is making a selfish decision based on lack of understanding. Is there a pallative care doctor who could talk this through with your brother.

I would ask the palliative care consultant for a best interests/general understanding meeting with all of you there (maybe some online?)

Resuscitation is not in fact your decision. In theory that should help you feel that it’s not your responsibility, less of a burden? Resuscitation is something that is done when someone’s heart has stopped. It’s a kind of medical treatment. And because it is a medical treatment, it is up to the doctors to decide whether a treatment is reasonable. Doctors can’t be forced to give a treatment that they think is wrong. Trying to resuscitate someone who is extremely frail, who has been deteriorating and whose heart has stopped, is likely to be useless, perhaps painful, certainly undignified.

In practice, it’s a decision that is made in discussion with the family. But if the doctors are saying to you that attempting resuscitation is a bad idea, please believe them and be at peace.

As for pain relief - I hope it will become clear to your brother when she needs pain relief that she should have it. But really, it’s not his decision and he shouldn’t feel that he has to fight anybody about this.

I’m sorry you are in this situation. I agree that you need to make sure that decisions are made with her palliative care team because then they will be able to reassure both you and your brother of any concerns, correct any misunderstandings and ultimately advise on the best action.

Is there a specialist palliative care team involved? Could she be referred? Her GP could do this if she is at home, or the ward Dr could if she is in hospital?
These are difficult, sensitive conversations and it sounds like your brother has some misconceptions which could be addressed.

This is an awful situation to be in. Can you arrange a chat with the care team so they can talk through the whole DNAR and what it would mean if they restarted her heart? He possibly thinks she would be awake afterwards. Same with the morphine and keeping her comfortable rather than in pain and prolonging the agony both for your Mum and for you as her family.

My Mum was on a morphine driver at the end. My Dad just wanted to take her home and he thought she would just be asleep in a bed as opposed to needing the care she was receiving whilst in a cancer hospital. She was doubly incontinent and on a special mattress with airflow to prevent pressure sores.

I will be honest and say it was the most horrific few months of our lives. You just want them pain free.

A DNAR can be put in place by the medical team if they believe it would not be in the best interest of the patient to resuscitate, regardless as to the wishes of the family. In other words, they don’t need your permission. Your brother is being selfish and only thinking about himself. You need to be honest with him - your DM is not going to recover, is likely to experience greater pain and suffering and he thinks it’s ok to prolong that.
I would contact MacMillan nurses and ask them for support.

Is there a palliative care team you can talk to?.

MacMillan can be a mixed bag re support so I would look at contacting Marie Curie instead.

Your brother is so wrong on both counts.

My mom died of cancer only age 68. Morphine was a godsend. We increased it a great deal in the last couple weeks and hoped it DID hasten a merciful end.

The physicians strongly advised DNR. They explained that CPR can break ribs and wreak other injuries on an already dying person, without buying much extra time.

Your bother is very misguided. Can you speak to a social worker or hospice expert who can advise you?

My understanding is that you don’t actually get to make any decisions when it comes to the crunch. It’s a sort of courtesy, consulting you and taking your views into account, but the medical team make the final call.

Put it this way, ask any doctor what they would prefer for their own relatives, and the vast majority, if not all of them, would be opting for DNR and morphine. Death is not the worst thing that can happen to a person, as most medics recognise.

My aunt died of cancer painfully. It was not pleasant.

Your DB is a complete arse if he thinks denying your mother pain relief is a good thing. At this stage she needs to be comfortable with all the help available.

Get her primary consultant/team to have a frank and honest chat with you both.

So he wants her to live as long as possible in as much pain as possible? Please don’t back down on this op.