When the Patient Refuses Hospice

[jeastridge]

George stepped out of the hospital room and shut the door softly behind him. As his Faith Community Nurse, I had just stopped by to check in and asked him if it might be a good time to talk. "She just dropped off to sleep after the pain medicine," he said. "We can talk for a few minutes." We stepped to an alcove at the end of the hall where we found two chairs in a private spot.

George's weary eyes filled with tears as he started to talk; he pulled off his glasses, wiping them rhythmically with the end of his sweatshirt before putting them back on. I offered tissues and encouraged him to tell me how things were going. "We've been married over 30 years now, and Kathy has always been so stubborn and determined. I admire that about her, but right now it is so hard. I think she hates me..." His voice trailed off and I asked him why he said that.

He went on to explain that Kathy had metastatic colon cancer and was currently being treated conservatively for a perforated bowel which the doctors hoped would seal up on its own, given time, antibiotics and intravenous nourishment. But through the entire hospital stay, the medical team had been very discouraging about her prognosis, saying there was little else they could do in terms of interventional care.

"Palliative Care came yesterday, and it did not go well." George sighed and almost laughed when he told me how strange the conversation had been with Kathy absolutely refusing to consider end of life care and the Palliative Care Team wanting to introduce the idea of hospice. Then his face turned dark again and he said, "That's when she turned on me! She said I am not on her side. I was just asking questions of the team, wanting to know what hospice means in a situation like this. She asked me to leave the room and said she could make her own decisions. She wants to get a referral to another medical center to be evaluated for more surgery. You know they won't do that! Why, she can't even be moved at this point."

He cried for a few minutes and I reached over to pat his shoulder in an attempt to comfort him.

"Even pain management is a problem. She keeps refusing pain meds and she is in so much pain. The Palliative nurse presented several options, including patches. What do you think of that idea? She says the pain meds will keep her from enjoying the grandchildren when they come in this week-end." George looked at me questioningly.

As Faith Community Nurses, we are trained to listen, ask questions and help people to navigate difficult waters. Because of the common thread of faith, we are free to offer spiritual guidance as requested and as seems appropriate. I asked George if he would like me to pray for wisdom and he tearfully agreed, saying that would be helpful. After prayer, we read a few scriptures and then we discussed potential paths forward.

What does a patient and their family need at a time like this? How can we see beyond the spoken words to the messages the patient and their family are relaying to us? How can we be true advocates for a patient who wants to make a different decision than we see as medically indicated? How can we, as professional nurses, find ways to be nonjudgemental and supportive in the face of limited treatment options?

The patient needs to feel supported

Because Kathy was coherent and able to make her own decisions, she wanted to exercise whatever control she could. It was clear that she understood the severity of the situation, but she remained in strong denial, unwilling to do anything that she perceived as "giving up." She had always been a valiant fighter; her message to us was that she didn't want to change that in her last battle. As George and I talked, he became clear that she wanted him to be her advocate, always in her corner, helping her face the end of her life in the way that suited her best. As George said, "She always been determined. She's not going to change now; not when it matters so much. She wants us to remember her as someone who never quit fighting."

The patient needs accurate and helpful information for her particular situation

Because Kathy's need for control was so strong and her suffering so intense, she came across as impatient and exasperated with staff that she didn't feel would bend enough to her way of seeing things. She made it clear she did not want IV drugs and that she wanted to go home so she could get stronger to have surgery. From that point, Palliative Care directed their energy to working on getting her pain under control with Fentanyl patches along with a shorter acting opiate. They tried their best to ask questions and listen, listen. Over the ensuing days, George began to act as her strong advocate, helping the staff to support her and acting as a go-between when needed.

Hospice isn't always possible

Hospice just wasn't an option at this time for Kathy and George. Sometimes, patients and families struggle to find common ground around the topic of hospice. Despite the best education and information Kathy adamantly refused to consider the service and Case Management began to focus, instead, on getting the necessary equipment in the home and supporting George so he could take care of her there. We made sure George had all the information he needed about hospice and about how to initiate that service should Kathy change her mind in the days and weeks ahead. He proactively interviewed a hospice team and got the number to call in his phone.

Kathy ended up going home with George and a team of neighbors taking care of her. With her abdominal pain under control she began to take a few bites of food and appeared to enjoy being in familiar surroundings. They made a trip to the doctor via ambulance for her routine treatment and blood work. Their children and grandchildren came in from out of town. Kathy orchestrated the purchase of a new grill and then ordered up a huge cook-out while she sat poolside in the chaise lounge, wrapped up, holding George's hand, and enjoying the site of her family gathered around, enjoying life.

Joy Eastridge, BSN, RN, Certified Lay Minister Parish Nurse UMC

[jeastridge, BSN, RN]

Good story. Now anybody have advice for a patient in a similar condition: End stage CHF is her diagnosis. She is a fighter and very much demands to be in control. She is not compliant with meds, but is cognitively able to make well informed decisions. Is in terrible pain due to spinal stenosis but won't take pain meds because she doesn't want to be drowsy....but NSAIDs and Tylenol do nothing to help. Biggest difference between my patients and the one in the article is support. The patient and husband have no children, no siblings, not really any close friends, not church goers. They are wealthy enough that they don't qualify for any covered services. But poor enough that they really can't afford paid caregivers. The husband, who is the patient's caregiver, has cancer and a brain tumor himself. They refuse assisted living because they want to stay in their home. The patient refuses hospice because she is not ready to give up, but unfortunately we are close to a point that she no longer qualifies for home health...and thus her weekly bath aid...the main reason she wants home..will be done as well. It makes me sad, but I don't think there is any thing else I can do and the patient and husband need way more assistance than is even being currently provided.

There are times when we do everything in our power and we cannot make the situation ok--at least safe and comfortable in our estimation. When those times happen, sometimes we have to follow along and let the situation unfold. In my experience, it's usually not long until something happens that forces a change. Hang in there. Joy

[jeastridge, BSN, RN]

The elephant in the room with respect to terminal patients (and just as often if not more so, their families) who refuse hospice is not the issue of a patient refusing what appears to be the mpst reasonable form of treatment, but rather in demanding their providers provide futile, resource-intensive, and often harmful treatment inappropriately.

The example above is a pretty good illustration of someone making an informed decision to refuse a treatment plan and working with their providers to achieve an appropriate alternative for the time being. I applaud the medical team for avoiding undue paternalism and working to uphold the patient's values and autonomy. However, the story cuts off, and I can't help but wonder what happens when the patient deteriorates and if she seeks more intensive, yet futile, treatment at that time.

The patient ended up having several good weeks at home with family in and out. Then she fell and had to go the ER for pain management. After that, she realized she was dying and hospice came in for a few days before she died peacefully at home, surrounded by her family. For her, it was the way she wanted it. As her husband said, "she fought it until the end." Lest this follow up note make things sound too rosy, it was not. Suffice it to say, there were times pain got out of control, frantic calls to doctors, bowel problems--in short, symptoms that could have been managed better and more appropriately with hospice--but the family muddled through and she was a warrior throughout. She did it her way. But it wasn't easy. Joy

[Susie2310]

--in short, symptoms that could have been managed better and more appropriately with hospice--

Under the best conditions, with a very good hospice team that responds quickly to provide pain and symptom management, yes, but not all patients/family members have positive experiences with hospice.

[Cowboyardee]

The patient ended up having several good weeks at home with family in and out. Then she fell and had to go the ER for pain management. After that, she realized she was dying and hospice came in for a few days before she died peacefully at home, surrounded by her family. For her, it was the way she wanted it. As her husband said, "she fought it until the end." Lest this follow up note make things sound too rosy, it was not. Suffice it to say, there were times pain got out of control, frantic calls to doctors, bowel problems--in short, symptoms that could have been managed better and more appropriately with hospice--but the family muddled through and she was a warrior throughout. She did it her way. But it wasn't easy. Joy

Thank you for providing the followup story.

Not that you mistook my meaning, but more so just to be clear, I don't mean to portray the ethical issues surrounding a patient or their family refusing recommended plans of care for end of life issues as at all simplistic. Just as these matters don't boil down to an issue of whether medical professionals accept and supports a patient's values/wishes/autonomy or not, the issue also is more complicated than whether a patient or their family accepts reality and makes realistic demands of their providers.

For example, it's not self-evident where the line is drawn as to which measures should be considered futile or harmful. Is an extremely expensive measure that fully restores one life for every 10 patients who receive it futile? One life for every 1000, or 1,000,000, thereby sapping resources from measures with much better outcomes? A measure that causes agony for the 99 people it fails along with the 1 person it ultimately saves? A measure thats expensive and painful and works only half the time, and leaves those it does save from death in a vegetative state?

I don't really have the answers here. Mostly, I'm just wary of presenting a single ethical principle (in the case of this thread, autonomy, I suppose) as the main or sole guiding principle in what's, in reality, a very thorny issue.

[jeastridge, BSN, RN]

Thank you for providing the followup story.

Not that you mistook my meaning, but more so just to be clear, I don't mean to portray the ethical issues surrounding a patient or their family refusing recommended plans of care for end of life issues as at all simplistic. Just as these matters don't boil down to an issue of whether medical professionals accept and supports a patient's values/wishes/autonomy or not, the issue also is more complicated than whether a patient or their family accepts reality and makes realistic demands of their providers.

For example, it's not self-evident where the line is drawn as to which measures should be considered futile or harmful. Is an extremely expensive measure that fully restores one life for every 10 patients who receive it futile? One life for every 1000, or 1,000,000, thereby sapping resources from measures with much better outcomes? A measure that causes agony for the 99 people it fails along with the 1 person it ultimately saves? A measure thats expensive and painful and works only half the time, and leaves those it does save from death in a vegetative state?

I don't really have the answers here. Mostly, I'm just wary of presenting a single ethical principle (in the case of this thread, autonomy, I suppose) as the main or sole guiding principle in what's, in reality, a very thorny issue.

Thank you! It's always good to try to look at the whole picture. It's complicated, for sure, and becoming more so...I appreciate your feedback and thoughtful input. Joy