When the Patient Refuses Hospice

Sometimes patients refuse end of life care even when the prognosis is grim. How can we best support patients and their families when they say "No!" to hospice?

When the Patient Refuses Hospice

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

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jeastridge

About jeastridge, BSN, RN

(Columnist)

Joy has been a nurse for 35 years, practicing in a variety of settings. Currently, she is a Faith Community Nurse. She enjoys her grandchildren, cooking for crowds and taking long walks.

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Specializes in Hematology-oncology.

Kudos the medical team for helping Kathy get home to be with her family for the weekend. That's what she wanted more than anything, and you guys made it a reality.

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The patient, who is able to make their own decisions, has the right to refuse what the medical team believes is medically appropriate, i.e. palliative care and hospice. We support patients and their families by listening to the patient's wishes, as expressed by the patient and their trusted family member/support person, learning what we need to do to support the patient's wishes, respecting the patient's wishes, continuing to support the patient's choices, and making it possible for the patient to continue receive necessary medical care from their doctor, with all necessary teaching provided for the family member who will be providing the care for the patient at home, and all necessary equipment etc. provided for the patient's care by their family members/caregivers at their home. As you described above. It is also important that the patient and their family know that if the patient changes their mind, hospice is available for them, as was done.

What was the plan for ongoing management of the patient's pain? How was the ambulance ride that was provided to take the patient to their appointments with their doctor set up; did the patient have to pay privately for this or was this covered by their insurance?

It sounds as though the patient's medical/nursing team did a great job of supporting the patient and her family.

Good article.

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Specializes in Med/Surg/Infection Control/Geriatrics.

What a wonderful story!

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My sister was in this very situation. Immunotherapy has given her her health and life back. Glad the team was willing to listen and facilitate this patient's desires, and that you were able to support her husband as well.

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I'm glad this article was featured! It's a very important skill to walk in that gray area between hospice and healing. The nurse in the story handled the situation beautifully.

Here are some of my thoughts as I was reading the article:

-- This could have very easily been one of my patients. Many of them have months left to live. If they live past the 6 month expectancy that is the qualifying factor for hospice, they are reevaluated and often approved for another 60-90 days of service. This will continue sometimes for a long time, other times they are taken off service if they appear to be getting better-- with the option to sign back on as they decline at a later time. I recently had one patient who came into our palliative care unit looking like they had days to live. They recovered to the point where they literally drove their own car home! The patient didn't sign off from services because it was clear that their condition was life-limiting and would eventually cause rapid decline-- but it was not happening at that time. :-)

-- It is very common for palliative procedures to be covered by hospice-- procedures that do not extend life but provide comfort. This could be as simple as providing oxygen or a pleurX drain. There have been times when a patient is declining but wishes to have just a bit more time to allow their loved ones to come and say goodbye. We have done blood transfusions, TPN therapy, BiPap, etc. to allow those reunions to happen. Patients are also treated (if they wish) with antibiotics for UTI's and lung infections and cellulitis. Again, these treatments do not cure them of their underlying disease, but they may give them a bit more time, and increases their quality of life in the time they have left.

-- A patient has the right at any time to sign off hospice and seek more aggressive treatment and care, or seek the opinion of a specialist to make sure there is nothing more that can be done for the patient. I have seen people sign on to service, then a family member convinces them that they should see so and so specialist because that person can cure them. If they wish to do that, we will often hold off on officially signing them off service until we hear back from the family after that consultation has taken place. More often than not, they will remain on hospice after the consultation-- but now at peace that truly nothing more can be done-- so they can now focus on the time they have left.

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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.

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Specializes in Psych, Corrections, Med-Surg, Ambulatory.
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.

I like to think that maybe Kathy just didn't like the idea of anything being foisted on her. Maybe after she was able to exercise some control she came to her own realization that she needed better pain management and other measures that hospice would be able to provide.

Sometimes people just need a chance to sit with the situation and think about things without a lot of external input. This is her life we're talking about, after all.

But I have seen the sad side of (mostly families') need to pull out all the stops and fight to what didn't need to be such a bitter end.

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Specializes in Faith Community Nurse (FCN).
The patient, who is able to make their own decisions, has the right to refuse what the medical team believes is medically appropriate, i.e. palliative care and hospice. We support patients and their families by listening to the patient's wishes, as expressed by the patient and their trusted family member/support person, learning what we need to do to support the patient's wishes, respecting the patient's wishes, continuing to support the patient's choices, and making it possible for the patient to continue receive necessary medical care from their doctor, with all necessary teaching provided for the family member who will be providing the care for the patient at home, and all necessary equipment etc. provided for the patient's care by their family members/caregivers at their home. As you described above. It is also important that the patient and their family know that if the patient changes their mind, hospice is available for them, as was done.

What was the plan for ongoing management of the patient's pain? How was the ambulance ride that was provided to take the patient to their appointments with their doctor set up; did the patient have to pay privately for this or was this covered by their insurance?

It sounds as though the patient's medical/nursing team did a great job of supporting the patient and her family.

Good article.

Thanks! I think the family ended up paying privately for the ambulance ride but it didn't seem to be a problem for them. The pain management plan was updated several times after the patient went home--a process that is easier with hospice but possible with education and dedication. Joy

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Specializes in Faith Community Nurse (FCN).

see above.

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Specializes in Surgical Specialty Clinic - Ambulatory Care.

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.

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Specializes in Faith Community Nurse (FCN).
The patient, who is able to make their own decisions, has the right to refuse what the medical team believes is medically appropriate, i.e. palliative care and hospice. We support patients and their families by listening to the patient's wishes, as expressed by the patient and their trusted family member/support person, learning what we need to do to support the patient's wishes, respecting the patient's wishes, continuing to support the patient's choices, and making it possible for the patient to continue receive necessary medical care from their doctor, with all necessary teaching provided for the family member who will be providing the care for the patient at home, and all necessary equipment etc. provided for the patient's care by their family members/caregivers at their home. As you described above. It is also important that the patient and their family know that if the patient changes their mind, hospice is available for them, as was done.

What was the plan for ongoing management of the patient's pain? How was the ambulance ride that was provided to take the patient to their appointments with their doctor set up; did the patient have to pay privately for this or was this covered by their insurance?

It sounds as though the patient's medical/nursing team did a great job of supporting the patient and her family.

Good article.

Thank you. As it turned out, resources for this family were not a concern. I don't know about how the reimbursement for the ambulance went but I suspect that will have to pay for that privately. As time went on, they did have to adjust pain management several times through their oncologist. Joy

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