DNR your choice?

[Guest]

Hi everyone,
My gran was diagnosed with bulbar onset mnd in January. She’s already struggling a lot to talk, chokes and has agreed to have a peg tube placed for when she needs it. Her limbs are all still working fine.
Recently while in hospital a doctor told her in a quite offhand manner that ‘obviously she wouldn’t be resuscitated because of her condition, if it came to that’
Does anyone know if this is true?? I thought this was the individuals choice and not taken out of their hands by a Dr?
Or does it depend on what the person is suffering from?
Thanks for any information.

[Terry]

Hi jee;

It is up to the person concerned and needs to be a completed form carried or produced and the relevant time.

I have had a completed form for eight years now, and many of us do not want to be resuscitated should it come to that.

Love Terry

[Guest]

I believe it's the choice of the patient, my wife agreed for her doctor to put the DNR into place and this was done about 5 months after diagnosis when we were requested to fill in a will of life ? ( I think that's what it was called ) basically stating what my wife's wishes were
Tim and Mary

[Lynne K]

Jee, that doctor has a nerve. It is not his decision to make. I'd like somebody to report him but we probably aren't strong enough to have such complaint battles, well I don't feel so. Lynne

[kd1]

I don't know if this is helpful but I was told by the ventilation consulltant that a person with MND and breathing difficulties would never come off a ventilator if resuscitated. Kate

[Barry52]

Hi Jee,

I feel that the doctor was out of order and should be reported. As others have said it is the patient who has the choice. Like Terry, I have an advanced decision to refuse treatment known commonly as ADRT. Of course you can also have an advanced care plan which may say the patient wants all medical aids i.e. feeding tube and resuscitation.

Whilst on this subject one can also consider organ donation. In England and Wales there is a brain bank which uses the postmortem donated organs for research into a cure.

Barry

[MNDConnect]

Dear Jee,

A DNR order allows you to choose whether or not you want CPR in an emergency. It is specific about CPR. CPR is the treatment you receive should your blood flow or breathing stop. Treatment is usually by:
•Simple efforts such as mouth-to-mouth breathing and pressing on the chest
•Electric shock to restart the heart
•Breathing tubes to open the airway
•Medicines
It is your right to choose whether you sign a DNR or not and the discussion about what is right for you should be had with your healthcare provider.

With kind regards
Jacqui Anderson
Senior MND Connect Adviser

[nunhead_man]

Whilst on this subject one can also consider organ donation. In England and Wales there is a brain bank which uses the postmortem donated organs for research into a cure.Barry

I need to have a look at the Motor Neurone Disease Association magazine again.

There was article in it this time about organ donation, saying, I believe, but generally organs will not be accepted for donation from people with motor neurone disease but that there is a separate process for offering your tissue for research post-mortem

Perhaps somebody has the magazine in front of them can check it and come back here?

Best all

Andy

[Guest]

Hi Andy
Just had a look in magazine and it is indeed a separate process , and it is a tissue donation with a brain bank . I think it is what Barry meant but instead of saying tissue he said organ but the same principle really !


Love Chris

[Ellie]

The brain & spinal cord are the "tissue" / "organ" which may be donated for research into MND.

Such donations need to be organised in advance for consent etc.

(There's also a Brain Bank in Ireland.)

Love Ellie.

[Ellie]

Hi Jee.

Yes, it was insensitive and heartless of that Dr to make such a flippant unsolicited remark.

But it is a discussion, however difficult that may be, that your Gran should have with her next of kin. (Not just your Gran, but everyone with an MND)

Love Ellie.

[Barry52]

Thank you Ellie for advising the brain bank in Ireland.

Hi Chris,

I was referring to the brain and spinal cord, although tissue samples are also accepted. Sheffield are in the process of creating a consent form and once it is signed off I will advise a link.

Barry

[Smudge]

When John was in the hospice while our building work was taking place the doctor called me in to say that if John went into cardiac arrest they would not intervene. No discussion had taken place with him (he didn’t want to know his life expectancy or discuss things like that) & the conversation I had with the doctor that day was an announcement rather than a duscussion.
She explained her reasons perfectly & I left that meeting feeling that it would have been cruel to insist, even though I knew that John would not have voluntarily been DNA if he had been asked.

[Ellie]

Every time I go into my Hospice I am asked a specific question on whether or not I want to be resuscitated in the event of a cardiac arrest.

Personally, I'd be horrified if someone was asked this question on my behalf, but maybe that's just me?

[ccinjersey]

Don't know if the same laws regarding this subject apply in your country as it does here, but if they do here is some useful information to know and be aware about regarding this matter.

CC xox

***
Terms to Know

�� Health Care Advance Directive – The generic term for any document that gives instructions about your
health care and/or appoints someone to make medical treatment decisions for you if you cannot make
them for yourself. Living Wills and Durable Powers of Attorney for Health Care are both types of Health
Care Advance Directives.

�� Living Will – A document in which you state your wishes about life-sustaining medical treatment if you
are terminally ill, permanently unconscious, or in the end-stage of a fatal illness.

�� Durable Power of Attorney for Health Care (or Health Care Proxy) – A document in which you appoint
someone else to make medical treatment decisions for you if you cannot make them for yourself. The
person you name is called your agent, proxy, representative, or surrogate. You can also include
instructions for decision-making.

Myth / Fact

1. You must have a Living
Will to stop treatment
near the end of life.

�� Treatment can be stopped without a Living Will if everyone involved
agrees. However, without some kind of advance directive, decisions may
be more difficult and disputes more likely

�� The Durable Power of Attorney for Health Care is the more useful and
versatile advance directive, because it applies to all health care decisions
and empowers the person you name to make decisions for you in the way
you want them made.

�� Over 2/3 of the adult population have no Living Will or other advance
directive.


2. You have to use your
state’s statutory form
for your advance
directive to be valid.

�� Most states do not require a particular form, but do require witnessing or
other specific signing formalities.

�� Even if your state requires a specific form, doctors still have a legal
obligation to respect your treatment wishes, regardless of the form you
use.

�� Most official state forms are either worded too generally or include multiple
choice options that may be too broad to guide decisions about the
particular medical situation you may find yourself in near the end of life.

�� The critical task is to clarify your values, beliefs, and particular wishes that
you want others to follow if they must make decisions for you.


3. Advance directives
are legally binding,
so doctors have to
follow them.

�� Advance directive laws merely give doctors and others immunity if they
follow your valid advance directive.

�� Doctors can always refuse to comply with your wishes if they have an
objection of conscience or consider your wishes medically inappropriate.
However, they may have an obligation to transfer you to another health
care provider who will comply.

�� The only reliable strategy is to discuss your values and wishes with your
health care providers ahead of time, to make sure they are clear about
what you want and are willing to support your wishes.


4. An advance directive
means “Do not treat.”

�� An advance directive can express both what you want and don’t want.
Never assume it simply means “Do not treat.” Even if you do not want
treatment to cure you, you should always be kept reasonably pain free and
comfortable.


5. If I name a health
care proxy, I give up
the right to make my
own decisions.

�� Naming a health care proxy or agent does not take away any of your
authority. You always have the right, while you are still competent, to
override the decision of your proxy or revoke the directive.

�� If you do not name a proxy or agent, the likelihood of needing a courtappointed
guardian grows greater, especially if there is disagreement
regarding your treatment among your family and doctors.


6. I should wait until I am
sure about what I want
before signing an
advance directive
.
�� No. Most of us have some ambivalence about what we would want, and
that’s OK, because treatment near the end of life can be complicated. We
can’t predict all the facts and circumstances that may face us in the future,
and treatment wishes may change. You can, at least, appoint your proxy if
you have someone whom you trust.


7. Just talking to my
doctor and family about
what I want is not
legally effective.

�� Meaningful discussion with your doctor and family is actually the most
important step. The question of what is “legally effective” is misleading,
because even a legally effective document does not automatically carry
out your wishes.

�� The best strategy is to use a good health decisions workbook to help you
clarify your wishes; talk with your physician, health care agent, and family
about your wishes; put those wishes in writing in an advance directive; and
make sure everyone has a copy.


8. Once I give my
doctor a signed copy of
my directive, my task is
done!

�� No, you have just started. First, make sure your doctor understands and
supports your wishes.

�� Second, there is no guarantee that your directive will follow you in your
medical record, especially if you are transferred from one facility to
another. You or your proxy should always double-check to be sure your
providers are aware of your directive and have a copy.

�� Advance planning is an ongoing PROCESS. Review your wishes yearly or
anytime your health or family status changes, make appropriate changes,
and communicate those changes as needed.


9. If I am living at home
and do not want to be
resuscitated by an EMS
team if my heart or
breathing stops, my
advance directive must
say so.

�� Your advance directive will usually not help in this situation. If someone
dials 9-1-1, EMS must attempt to resuscitate you and transport you to a
hospital, UNLESS you have a special out-of-hospital DNR form or bracelet
used in your state. This is not the same as your health care advance
directive. In most states, both the patient and doctor must sign the special
form and the patient then wears a special identification bracelet or
necklace.


10. Advance directives are
only for old people.

�� It is true that more older, rather than younger, people use advance
directives, but every adult should have one. Younger adults actually have
more at stake, because, if stricken by serious disease or accident, medical
technology may keep them alive but insentient for decades. Some of the
most well-known “right to die” cases arose from the experiences of young
people (e.g., Karen Ann Quinlan, Nancy Cruzan) incapacitated by tragic
illnesses or car accidents and maintained on life support.