An Advanced Care Directive – Just an Option?!

(DE) It's that time again. I am sitting at Inge's bedside in the intensive care unit, holding her hand. She is breathing heavily, has her eyes closed and is asleep. As so often lately, the emergency doctor took her back to the hospital. Her heart, damaged after a heart attack a few years ago, was giving her more and more trouble. She then had difficulties breathing and had to be taken into medical care. In the last few months, the intervals between her hospital stays had become shorter and shorter. I was always by her side. I stayed with her this time, too, waiting for her to wake up.

A good life and the willingness to go

I have known Inge for decades. When I came to Munich as a young woman in the 1960s, she and her husband Martin looked after me like their own daughter. Their only son Andrew, who was only a year older than me, had worked as a chef in top restaurants until he met a young art student from the United States, married and emigrated to the USA after the birth of their first child. Professionally, he was successful there too, but the marriage broke up. His second marriage in America to a teacher also ended early because, at the age of 42, he suffered a heart attack and died. He left behind two sons from his first marriage and three sons from his second marriage.

Not only did my friend's five grandchildren live in America, but also her two sisters. Despite frequent visits to the United States to family members in Denver, Colorado, and Florida, they were happy to maintain their long-standing friendship with me. A bit of a family substitute, I guess!

Inge and I - two best friends

But age, with all its difficulties, did not stop at my friend's. Inge's friend's husband, Martin, died of cancer in 2009, and her damaged heart became weaker and weaker, and so did my friend. Nevertheless, I always cared for her because she had no one else in Germany, and we were close friends despite the age difference.

As friends who dared to face the facts and talk about them, in the last months, we often talked about dying. Inge was illusionless and pragmatic. "I am 86 years old. I've had a great life. When it's over, it's over!" she said again and again. Without regret or bitterness and with a clear mind, she repeatedly spoke out against life-prolonging measures, not wanting to suffer and waste away. But, of course, she had also recorded her wish in a legally valid Patientenverfügung, known in English as Advanced Care Decision*.

She was composed and ready to die when the time came.

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*What in Germany is known as the "what'sPatientenverfügung "is a document that an individual can use to express their wishes concerning their health care and medical treatment in case they cannot communicate this information themselves. Such a Patientenverfügung combines documents known in the UK as Living Will, Advance Directive, Advance Care Directive or Advance Decision to Refuse Treatment. In it, an individual will determine what medical treatments or care they will or will not consent to in a medical emergency, a terminal condition, or persistent unconsciousness, regarding treatments or life-sustaining measures that medical professionals may use to care for a person in that condition.

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The Advanced Care Directive is often ignored

One day, I was sitting at her bedside, and she didn't wake up. She was already in a coma in the intensive care unit for over a week. She was artificially ventilated. This was precisely what Inge had never wanted.

And it was up to me to stand up for her and her will, which turned out to be extremely difficult.

I presented Inge's Advance Care Directive document at every emergency admission. Every time I had to make a copy because the staff couldn't find the documents submitted earlier or didn't even look for them in the first place.

I went to the clinic every day to check on her and accompany her. Every day I spoke to the doctors and tried to make them understand that my friend did not want any more pointless life-prolonging measures. At least five copies of her Advance Care Directive were somewhere in the hospital filing cabinets, but none of the junior doctors I dealt with knew about it – on any of those ten days in intensive care.

The absurdity of this left me stunned, and the massive pressure from the doctors to keep Inge on life support left me helpless. Yet, on the other hand, I couldn't help but feel hopeful when they argued that the new high-dose antibiotic might again turn the tide.

I found it hard to fight against this wall of denial and manipulation by the doctors. I saw clearly that on each of these days, Inge had to experience and suffer what she had wanted to avoid through her Advance Care Directive. I was torn.

But at a certain point, I knew what the only right thing to do was. Her kidneys were barely working. She had water retention in her legs and throughout her body. She could no longer breathe independently and had not been conscious for days anyway.

I insisted that the machines should be switched off without any ifs or buts. A doctor finally agreed to do so. But on the way home in the underground, I received a call from the consultant of the intensive care unit. He could not agree with my decision.

I was overcome with bewilderment and anger.

How should this intervention be understood?! What right did he have to ignore the explicit will of my friend? It was her decision and not his! She could not express herself now, but she had written down her wishes in a binding document some time ago! She had talked about it again and again with her friend, namely with me, and never doubted her decision! So, why did this consultant believe he could wipe away and ignore her wishes with the stroke of a pen?

I also found it inappropriate to talk about such a severe issue on the phone in the underground, surrounded by crowds of people. So I asked for a face-to-face meeting the following day.

Needless to say, I was so upset that I couldn't sleep all night. I tossed and turned, trying to think of the best way to argue. But, of course, it would be best to remain calm and rational. At least, that's what I resolved to do.

However, my good intentions were tested the next day when I arrived at the clinic and saw that Inge was connected to the dialysis machine. When I expressed my bewilderment at this ignorance and disrespect towards a dying person, one of the doctors admitted that Inge had even been resuscitated several times during the night.

She would have wanted to go! She should have been let go! – But they didn't let her die, even though it was her time to go.

Conversations from person to person

Then there was the conversation with the consultant. I was angry but then considered that I wouldn't get far with a confrontation. An attack and accusations, which I felt like doing, would only provoke resistance.

The doctor was young, around 40, but quite understanding. I told him about the many conversations Inge, and I had had about dying. I assured him that her intention was not to have pointless life-prolonging measures. I described to him Inge's willingness to die peacefully and with dignity after a fulfilled life. I again pointed out that Inge had written the Advance Care Directive for this purpose and in this spirit.

Then I asked him: "Imagine you are 86 and have been in a coma for almost two weeks. Soon you will be sent from the hospital to a care home. Your muscles will deteriorate, and you will no longer be able to move. You will no longer be aware of what is happening around you and will waste away in bed until you eventually die. My question to you is: do you want to die like that?" He looked at me and said, "No, I don't want that." I then pleaded with him to switch off the equipment.

Finally, he agreed and promised to initiate everything immediately. So, in the end, it was a good conversation. But the fact that it only took place at this point and only due to enormous pressure on my part does not correspond to the expectations one has when issuing an advance directive.

After this conversation, I stood at my friend's bedside and said goodbye to her. Then, when the nurse came to switch off the equipment, I left. I was sad, completely exhausted, but also relieved. Ten minutes later, my friend Inge was finally allowed to die.

The nurse had probably also observed my arduous struggle to ensure that my friend died with dignity. When I returned to the hospital the next day to collect her belongings, the nurse approached me and said, "I have to tell you something. You did very well." You often forget about the nurses because you don't perceive them as medical authorities. Still, because of their many years of experience, they know how the patients are doing. They can see when nothing more can be done. He seemed impressed that I fought and insisted on switching off the equipment. That pleased and confirmed me because you are damn lonely in such a situation.

What if you don’t have anyone?

I was sad, but a heavy burden fell from my heart at the same time. I had fought on Inge's behalf and pushed through her wish to die against the medical profession!

Later, when I tried to come to terms with what I had experienced, a terrible thought came to me. If you have no one to take care of you and fight for you to be allowed to die and not slowly waste away, then the interests of the doctors and hospitals are in the foreground, not your wish for a dignified death.

Do you then become a source of income? Will expensive treatments be carried out on you? Do you serve as an object for medical training on which procedures can be performed and tested? If medical equipment is not used to full capacity, will it be given to the terminally ill? Once the health insurance no longer wants to cover the hospital costs, will you be discharged and sent to a care home? Then you'll die, depending on how long your heart can take it and how much money you may have left. Inge had supplementary health insurance in addition to her compulsory health insurance. The money might have been enough to keep her alive for a while.

And something else became clear to me when I thought about it.

One should not underestimate how emotionally involved one is when accompanying a sick friend in death. Fortunately, my friend didn't negate death, which greatly benefited me. We often talked about what she wanted. And this helped me to finally make the decision for her to switch off the devices.

I can only advise everyone to talk to their children or other close people and sign an Advance Care Directive or a similar document. It makes a big difference whether the person concerned has put down their wishes themselves or whether someone else is faced with the decision to have life-sustaining equipment switched off or not. It's a very emotional situation. When the doctors argue that you could try a new antibiotic, you have hope again and are conflicted after all. But when everything has been discussed and written down, it's easier. Of course, it can happen that, as in Inge's case, the Advance Care Directive is ignored by the doctors. But even then, it gives the person who is forced to make a decision the necessary moral and legal backing.

(MS)