Death came to visit

[nutella, MSN, RN]

I think you make a great point when you point out that advanced directives are an important matter to ensure that there is somewhat control over one's care.

I also agree that we need to establish a culture within our society that permits the discussion of end-of-life wishes or general thoughts on what constitutes quality of life.

However, a living will is not the most important document and there seems to be some ongoing confusion around advanced care planning.

I would like to add some information:

- the one single document that any competent adult over the age of 18 years should have is the Health Care Power of Attorney, also called Health Care Proxy (HCP). In this form, that differs from state to state, any competent adult over the age of 18 can name a person (or several) who will make healthcare decisions in case that person is unable to do so (as determined by a physician). Anybody above the age of 18 should have one. If something happens to somebody and they are now unable to convey wishes or are not competent due to an illness/accident, and there is no decision maker named, it can place a huge burden on the next of kin. In some cases and states the next of kin has to go to court to ask for guardianship, which takes time but also restricts the guardian in a different way. A person who does not have a health care proxy form filled out, usually also does not get accepted to rehab. In any way - if there is one form that anybody should do - it is that form. Usually no expensive lawyer is needed, the form needs to be witnessed by adults.

- Living Will - this is a document where a person conveys what they would like to be done or not done or how in case of certain circumstances.While it is great to have a document that provides guidance, it is also a document that is not statutorily recognized in all states. For example, the state of Massachusetts does not recognize a "living will" as binding. If somebody presents a living will, the health care proxy can still use it for their own guidance in decision making. So - since not all states recognize the living will it is really the most important thing to do the health care proxy form and to talk to that person about the wishes. Otherwise they may struggle with decision making or not make the decision that the person would want.

And - a living will depends still on the interpretation by the medical professional and how the HCP understands the circumstances. When people write in their will "if there is no meaningful recovery" - what does that really mean???

And - a living will cost money that a lot of people do not have or want to spend, especially if it is a state that does not recognize the document as binding.

And - when there is a situation where the living will says one thing but the HCP says something different - the physicians will usually do what the HCP wants. Nobody wants to get sued. I have seen patients who never wanted to be intubated, who even had a provider order not to intubate. When the HCP panicked or thought that they are not ready to accept death and ask the MD "to do everything" that patient will still get intubated.

POLST/MOLST: Provider order for life sustaining treatments - this is a medical order (!) for people with serious illness or high age that is filled out with the MD/NP/PA and details if the patient should get intubated/chest compressions/ dialysis/ artificial nutrition and so on and forth. It is a portable order and goes with the patient.

It is always good to have conversations about one's wishes. I could get into a terrible car accident tomorrow and end up in the ICU on a vent - hopefully my spouse knows my wishes and would enforce them. We have talked about those situations so we know what the other one would want. My spouse would want extreme measures unless his head is "cut off" or he "can't think anymore". I asked my oldest child before he left for college and we had discussions, I gave him a health care proxy form to fill out.

There is a huge amount of confusion out there about advanced directives ....

[Anonymous865]

My mother passed away last January.

Mom had talked with us extensively about what she would and would not want. Whenever a difficult case was in the news, mom talked about what she would want if that were her.

Mom had a lawyer complete a living will.

She gave Medical Power of Attorney to her children and her husband.

We still had a difficult time with the medical staff particularly a palliative care NP.

If mom hadn't raised a hoard of strong, assertive children, we might have been badgered into doing what the medical staff wanted instead of what mom wanted.

[Davey Do]

Great article, madwife.

Belinda, my wife who is a medical nurse, and I regularly talk about death. If we're watching some movie where a major health crisis is invovled, I'll pause the movie to bring it back home. "What would you do if that victim was me?" "What would you wish to have done?" Etc.

I have had a living will, designated Power of Attorney for Healthcare and Finances backup in case something happens to Belinda, along with pre-paid funeral arrangements for several years now.

Doing so has given me some piece of mind.

[nutella, MSN, RN]

My mother passed away last January.

Mom had talked with us extensively about what she would and would not want. Whenever a difficult case was in the news, mom talked about what she would want if that were her.

Mom had a lawyer complete a living will.

She gave Medical Power of Attorney to her children and her husband.

We still had a difficult time with the medical staff particularly a palliative care NP.

If mom hadn't raised a hoard of strong, assertive children, we might have been badgered into doing what the medical staff wanted instead of what mom wanted.

I am sorry to hear that you had a difficult time despite knowing what your mom wanted.

You bring up an important issue in end-of-life care.

The cornerstone of ethics in the United States is autonomy / independence - patients are encouraged and asked to participate in decision-making regarding their wishes. Thus, we have to respect patient's liberty to make decisions that may be not congruent with our own ideas or clinician's recommendations.

But - and like everything in healthcare - this has become much more complicated. To enforce autonomy and liberty, patient-centered care with shared decision-making was introduced more into the medical community. Patients and their families are often lay people when it comes to medical decision-making but need to make decisions that will have impact on their life, quality of life, or even end their life. The idea is that the patient trusts the provider who also provides a recommendations - which should include considerations about what is in the patient's best interest.

Nowadays, with our growing orificenal of technology and "advances", we can easily border on futility. When the "highest" goal is to maximize the life-span, aggressive interventions and treatments are often chosen even though the outcome may be negative and leads to "suffering". A patient has the right to "suffer" if that is what they decide to accept and to go through in order to gain more time. They are allowed to sacrifice comfort for the sake of more time but it is important that they understand this implication.

Physicians can not be forced to provide futile treatments. After all, many interventions are medical orders and a physician has the right to "not offer" this treatment if the patient is not a candidate because the risk is too high or the outcome negative. Examples are surgeries or heart catheter interventions but could also include dialysis. Patients accept more easily when the surgeon or cardiologist says that the risk is too high and that is not an option because it would most likely result in death. That option is not available and thus patient autonomy does not include to choose a futile options. The same with dialysis - only that patients and families have a hard time with that decision. Nowadays patients who are 90 year old undergo dialysis to extend their life but if a person has other comorbidities, the nephrologist may not offer this treatment and refer to medical management.

There is also technology like high flow oxygen, which was thought to be a bridge until a person gets better or dies. But I think nobody really thought about the consequences of this device. When offered to end-stage COPD or similar patients who are so sick that they cannot come off but also do not wish to be trached and live on a ventilator - there is no place for them to go. They "live" in the hospital, which is not the same as home. Lately, I heard more often "if I had known that this is not like regular oxygen and I cannot go home with this - I would have not wanted it".

There are a lot of dilemmas all around.

As a palliative care nurse, I have no "agenda" - my goal is to provide information and care to help patients to live best with a serious illness. There is a huge grey zone where patients do not want to have pain for example or shortness of breath - but also want to be a full code - and though are limited in what can be realized. But it is not my place to pressure somebody into a decision or coerce them - that would take away the liberty in decision-making.

Nurses feel different about suffering than physicians, which is researched. Nurses care and have a hard time when patients suffer "needlessly". Patients and families on the other hand often have their own agenda and are not up front. We see a lot of problems related to not being able to cope with death and not being able to face "loosing somebody" - which ultimately can lead to requests for futile care.

As a palliative care nurse I also have a responsibility to realize when the patient asks for palliative care in the sense of "hospice" but this decision is driven by not understanding ones choices. There are cases where nurses or physicians request a palliative care consult because "the patient does not want any treatment and is ready to die" indicating they respect autonomy but the patient is not competent to make this decision due to mental illness or otherwise incapacitated. Or the patient clearly does not understand that for example life with dialysis is possible or that people can live at home with tube feeds.

There is a lot of room for conflict and friction at the end of life that can make everything more stressful for everybody.

Here is a good article:

What's the Role of Autonomy in Patient- and Family-Centered Care When Patients and Family Members Don't Agree?, Jan 16 - AMA Journal of Ethics (formerly Virtual Mentor)

[madwife2002, BSN, RN]

Nutella a great insight-In 2000 my mother was diagnosed with a stage 4 uterine ca. The specialist said nothing they could do-too far gone and was not operable. My mother and I had talked for years about end of life care.

I lived 5 hours away and would visit at the weekend. I missed a weekend and while I was gone my mother was offered radiotherapy, when I arrived at the hospital she was screaming in agony, was red raw between her legs and was in a horrible condition. The hospital had stopped pain meds because they said her mind was befuddled.

I talked with my mother, we agreed enough was enough and it was time for hospice-to control pain and move her down to where I lived. The RN on duty informed me that I was a cruel wicked daughter for asking for treatment to be stopped, that my mother had lots of life in her.

We moved her to hospice and my mother died peacefully 3 days later!!!!!!

[madwife2002, BSN, RN]

We have to be so strong when advocating for our loved ones! Sorry for your loss

My mother passed away last January.

Mom had talked with us extensively about what she would and would not want. Whenever a difficult case was in the news, mom talked about what she would want if that were her.

Mom had a lawyer complete a living will.

She gave Medical Power of Attorney to her children and her husband.

We still had a difficult time with the medical staff particularly a palliative care NP.

If mom hadn't raised a hoard of strong, assertive children, we might have been badgered into doing what the medical staff wanted instead of what mom wanted.

[Not_A_Hat_Person, RN]

When my mother got her cancer diagnosis, even with 2 lawyers in the family, we were all very surprised to discover that Massachusetts does not recognize living wills. You can write your wishes down, but it's not legally binding. When she was actively dying a few years later, we had to fight hard for me to be named her health care proxy because of her mental state.

[NextGen]

A cautionary tale: Children are not always the best medical POA. Appoint someone who is able to listen to medical advice and understand it.

My mother-in-law appointed her daughter as her medical POA. She spent her last 3 months of life in and out of hospitals and nursing homes. The daughter made terrible decisions that were against the advice of the doctors and nursing staff at both facilities. This caused my mother-in-law to spend her last few months in a tremendous amount of pain. She could have had a peaceful transition with the help of hospice. But the daughter refused to listen to anyone except herself.

Make sure that your medical POA can listen to medical advice, is able to understand or ask people who do understand to explain what is being said AND asks you what you want. This person can have a lot of input into how you end your life.