How You Can Help Your Patients with Advance Care Planning

The following are some stories that healthcare providers have offered and we welcome you, as a healthcare provider, to share your own personal story. It really will help others start the conversation about end-of-life care with their patients.

Who will speak for you, if you can't?

Warren Wheeler

Doctor of Medicine

Ruth was a Jewish woman in her late 70s with end-stage Chronic Obstructive Pulmonary Disease (COPD) who was rushed to the hospital because she couldn’t catch her breath. At the hospital, she told a nurse that she did not want artificial feeding or to be resuscitated if something were to happen to her. However, she did not want to sign a Do Not Resuscitate (DNR) order because she said it was against her religion. Her condition declined and she was intubated and cared for in the Intensive Care Unit. Her closest family members were two sisters who lived out of town but arrived a few days after she had been in the hospital. One sister was the Durable Power of Attorney (DPOA) for Healthcare, but did not know her sister’s wishes regarding treatment.

As a part of the Palliative Care Team, I met with Ruth’s two sisters about her prognosis. I explained the option of extubation and hospice care. Although there was a possibility that Ruth would breathe on her own after she was extubated, it would not make sense to also remove the endotracheal tube, if her sisters wanted her re-intubated if she had additional difficulty breathing once she was extubated. Doing so would likely lead to a Tracheostomy and Percutaneous Endoscopic Gastrostomy (PEG) and tube.

Ruth’s other (non-DPOA) sister immediately said, “There is no way my sister would want to be extubated and I will not agree to hospice.” Since Ruth was conscious, we were able to explain the options to her. She was able to nod "yes" to removing the tube and “no” to re-intubating if she could not breathe, even though she may die.

The team left the room and Ruth’s other sister stayed behind. After awhile, the sister came out of Ruth’s room and said that Ruth's sister did not want the tube removed. I asked Ruth’s other sister (with DPOA) to make the decision. She was torn and overwhelmed and could not make the decision. To further complicate matters, the sisters were not in agreement about what to do. Several days passed and Ruth’s sister with DPOAH could still not make the decision to extubate. I met with her again and explained what was happening to Ruth’s organs. Her sister, full of uncertainty and guilt, and in discord with Ruth’s other sister, decided to have Ruth extubated. The other sister vowed to never speak to her again.

As a hospice and palliative medicine physician, I live this story every day with different patients and different families. So much of the pain, suffering and family discord can be prevented if physicians have a conversation about advanced care planning with their patients much earlier.

When a patient hasn't expressed their wishes, it makes it very difficult for the family to decide what to do, and oftentimes the patient suffers needlessly.

Pam Cate

Advanced Practice Nurse

We had a woman in the hospital with respiratory failure. The power of attorney for healthcare did not live in town and had not seen the patient for years. The patient had an advance directive that stated she did not want to be kept alive on machines such as a ventilator or feeding tube. When the healthcare agent was contacted by phone, she said she wanted “everything done.” The healthcare agent flew to Las Vegas and when I met with her, I showed her the patient’s advance directives. I asked her if she had ever spoken with the patient about her wishes if something like this happened. The healthcare agent said she felt guilty making any decisions that might allow the patient to die. I reminded her that her responsibility was to follow through on what the patient wanted and help to honor the patient’s decisions. The healthcare agent felt a great burden was lifted when she realized that the decision was not hers to make, but the patient’s. Immediately, we stopped the unwanted “machines” that were preventing the patient from having a natural and peaceful death.

This is a gift to your loved ones, who don't have to make decisions for you, only follow them.

Christine Estrada

Doctor of Osteopathy

During my residency, I treated a patient who was in his early 60s and had pancreatic cancer. He had talked to his family members about his final wishes but an advance directive document was never written and signed. I set up a meeting with him and his family to talk about an advance directive, however, a day before the meeting, the patient “coded” (stopped breathing). We proceeded with the usual treatment and intubated him. When the family arrived, we sat down and discussed what they knew about their loved one's final wish. The family seemed clear on what he wanted, “He does not want to be intubated, he does not want a ventilator breathing for him and he does not want to be resuscitated,” said a family member. Ultimately, the family took him off life support and opted for comfort measures only. They were able to help keep him comfortable for the remainder of his life.

It is important to have an advance directive because we never know what life is going to throw at us. Being a medical provider, I have seen situations where people end up staying on artificial life support and receiving medical treatment that they do not want. No matter what age you are, it is important to have an advance directive. This way, your loved ones don’t have to make decisions for your care without knowing what you would want. With an advance directive, you increase the chance of having your desires for living fulfilled. This is a gift to your love ones, who don’t have to make decisions for you, only follow them.

Are you prepared for the unexpected?

Karleen Adams

Doctor of Osteopathy

I had a patient at the hospital that had liver failure and it progressed to renal failure and eventually multi-organ failure. He was intubated in the Intensive Care Unit (ICU) and didn’t have an advance directive explaining his wishes for the type of treatment he did and did not want. The wife was willing to sign a Do Not Resuscitate (DNR) but was unsure about removing the feeding tube or stopping dialysis and other aggressive therapy. We kept trying to meet with her to discuss what to do because his body was shutting down, but we could not get the wife to come in. Eventually, the patient woke up, which was unexpected and I was able to have a non-verbal conversation with him. He gestured to the tube, “You want that out, don’t you?” I said. He nodded yes. Then I said, “You want that out even though it means that you might die,” and he nodded yes. I asked him the same question in different ways to make sure that he was thinking clearly, and he said yes every time. I also asked him, “Would you like to leave the hospital, go to an in-patent hospice and stop aggressive care?” he nodded yes. But since he did not have an advance directive, it was his wife’s prerogative to make these things happen as he was not able to sign his own consent forms. Still, she would not come in for a meeting. Eventually, the patient ripped the tube out. The poor man was suffering tremendously. I believe he was spiritually suffering and physically suffering. He was just lying in bed, not being able to eat or drink. Ultimately, he made his wishes known to me, but since he did not have an advance directive, the wishes could not be carried out without his wife’s actions. All I know is that this is not what he wanted, but this is what he was getting.

Although this was hard for the wife, she felt she was doing the right thing by stopping aggressive treatment and allowing him to die comfortably and with dignity.

Catrisha Cabanilla-Del Mundo

Doctor of Osteopathy

I remembered another patient who suffered a stroke but had no advance directive. His family had different opinions regarding his care. For instance, two of the patient’s children wanted their father to die naturally and peacefully, but the others wanted life support treatment. They could not collectively make medical decisions. This made it difficult for the doctors to know what to do with the patient. Eventually, the patient developed infection, had CPR and died at the hospital. These are common cases. There are many patients who do not have advance directive and their families become stuck in making the decisions, which are not easy to make.

I have conversations with patients that have terminal diagnoses, regarding their wishes. For example, we discuss things like, “What would you have done if this occurs? If your heart stops, would you want us to do CPR or life support?" Who would you want to make the decisions for you? It is important to establish as much as you can while the patient is able to decide for themselves, so that the decisions are not made by the family, which might be struggling to figure out what the patient would have wanted.