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To Say or Not to Say Hospice?

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This article describes one patient encounter where the family requests that the word "hospice" not be used. The author discusses some of the important issues to consider when this request is mentioned.

by jeastridge jeastridge, BSN, RN (Trusted Brand)

Specializes in Faith Community Nurse (FCN).

To Say or Not to Say Hospice?

Her niece met me at the door and whispered conspiratorially, "Don't use the word 'hospice.' I'm afraid it will make her give up." As she ushered me down the long hall to the dark room shut off from the world outside by long curtains that resolutely refused to let in a glimmer of light, I considered my response and my approach to discussing end of life issues with both the niece and her aunt.

Already confined to her bed, Laura* rested with eyes closed and sunken into her wrinkled face. I noted the labored breathing, the grunting expirations, the oxygen cannula. I gently touched her hand and wrist taking a brief count of her skipping heart rate, the result of an overworked, weary, aging heart. In the background, the drone of the concentrator made her whispered answers to my questions hard to hear. I leaned in close to catch her efforts at single word responses, trying to assess her current level of consciousness and her ability to participate in our discussion.

She was alert at intervals, slipping in and out of consciousness as her intake of oxygen fluctuated below the level needed to keep her fully with us. "She is not eating any more," her niece told me, "and I can barely get her to drink."

I asked the patient about pain and she was able to tell me of shoulders that ached, but mostly, she fought to breathe and begged for relief with eyes growing dull and dim.

I talked with them about medicines that could help Laura with her shortness of breath and about ways we could work together to decrease her clearly visible anxiety.

The niece slipped away to talk with the social worker in the other room, leaving us alone. While I busied myself with the steps of the assessment process, I asked a few questions, hoping to open the door of communication between us. She clarified that this was her home and that she had lived here "a long time."

Quietly, I listened to lungs, felt for pulses, asked about bodily functions, making mental notes about swollen feet and dusky fingernails. All the while, Laura maintained that one position in the bed that maximized her ability to breathe. I asked her about how long she had been struggling with lung disease and her responses became vague; time seemed to narrow down, almost like pinpoint pupils, focused on the here and now, in and out, the next breath. of. air.

I noticed the slight bulge of a pacemaker in her left chest wall and asked her about that. She told me she had an implanted defibrillator; again, she was unsure about how long it had been there. It was the opening to talk about end of life. "Laura," I began, "How do you feel about turning off your defibrillator so that if your heart stops beating, you can just go on?"

She nodded yes, and I went on to discuss other important topics related to her wishes at the end of life, including comfort measures and non interventional care based at home which would be focused more on helping make every day as good a day as it could be, without worrying so much about numbers of days. She nodded her consent and dropped out of conversation, closing her eyes to signal that she was done and that I should move on and leave her to catch her breath.

In the other room, the social worker continued to discuss hospice in general with the family. I joined their conversation and the niece worriedly asked me, "What did she say?" as if by bringing in hospice, she were betraying her aunt.

I told her that we had discussed a Do Not Resuscitate Order, Comfort Measures and end of life issues, but that I had not specifically used the word "hospice." The niece let out a sigh of relief and a small smile replaced the worried line of her lips pressed together.

As the admission progressed, I wondered about the wisdom of not using the word "hospice." Is it helpful in the initial stages to not use the word or is it better to forge ahead, putting it out there for everyone in the family to know and handle in their own way? I decided that the burden remains with the professional hospice nurse, to make the decisions at hand as clear as possible, whether or not the actual word "hospice" is used.

I felt confident that Laura could see clearly what this new nurse was all about and what my coming represented. I could tell that she understood the significance of the end of life questions. She knew, in her heart of hearts, that her lungs were slowly clamping down and stiffening up. Already having refused to go the hospital multiple times, Laura seemed at peace with the alternative of receiving comfort care in her own home, surrounded by loved ones. Whether named or not, hospice services can provide consolation and a sweet release from striving and pushing forward when death is imminent and goals change.

Before I left, I went back to the room to say goodbye to Laura. I adjusted her covers, hoping to help her get more comfortable; then I reached up to straighten a curtain that had been jostled by the movement of the blanket. When I did, a single small shaft of light lit up the room.

Joy Eastridge

4/11/15

*Name changed to protect privacy.

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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18 Comment(s)

Coriander, BSN, RN

Specializes in Hospice & Palliative Care, Oncology, M/S.

Lovely. I think the word hospice can have different meanings for some, and doesn't always need to be said. Thank you for this.

toomuchbaloney

Has 43 years experience.

Agree that we don't need to use the term "hospice" but we cannot and should not be precluded from discussing end of life subjects with the hospice beneficiary. They have the right to discuss difficult topics about their imminent death should they want to, regardless of the discomfort that causes those who will survive the episode of care.

jeastridge, BSN, RN

Specializes in Faith Community Nurse (FCN).

Well said. Whether or not we use the specific word, "hospice," the intent of pursuing comfort care must be abundantly clear to the patient and also to those involved in their care. Thank you for your comment.

Thank you for this well-written article. It gives a detailed insight into the life of a hospice admission nurse.

I am a hospice nurse practitioner, and usually see the patient within a week or less to do the initial visit. Here are some of my thoughts in no particular order.

1) We have to allow patients and family time to accept the change in their home. They have usually been admitted to a hospital, where they are given really bad news. Then they are discharged as soon as they will agree to hospice service. A bunch of people start calling, and showing up within the first two days (admission nurse, MD/ARNP, chaplain, social worker, follow up nurse, CNA, medical equipment).

I think the admission nurse role is to help the patient and family understand the process, and tailor the process to their wishes.

2) Patients and families have to be allowed the time to come to acceptance. If you are a text-booky type, this is the last stage in the 5 stages of loss and grief.

In my approach, the first visit is a time to meet the family and patient, and let them lead. I try not to make changes or suggestions unless they ask. I rarely discuss their disease prognosis, progression or end-of-life, unless they ask. I do discuss comfort. I thoroughly discuss the difference between advanced directive, durable power of attorney and do not resuscitate. Even if the hospital, primary care physician or admitting nurse has already addressed it. I always tell them, "no decision has to be made right now, and everything that is decided can be changed".

3) Devices are a sensitive subject. I don't feel that the discussion of drain tubes, defibrillator/pacemaker, feeding tube, pain pump, or any other medical device should be addressed on day one. Getting a patient admitted to hospice service, and allowing them to accept this "new normal" in their home is enough for now. Often, these devices are a psychological crutch in this time of need. Trying to take these away early on is unfair.

4) Medications. During medication review, it is common for hospice patients to be railroaded into discontinuing most of their medications. I use the term "railroaded", because that is how the industry is right now. It is one part of the process I disagree with. Just like medical devices, medications offer a psychological crutch. Rarely does simvastatin, clopidogrel, alendronate, donepezil, memantine, etc. offer any real harm, but abruptly taking them away may cause unhappiness and discomfort.

5) Medications 2. If a medication is related to the hospice diagnosis, hospice covers it. Expensive medications like apixaban, in a heart failure patient with atrial fibrillation would not be covered under hospice.....but. a) They probably have enough to get through the transition and acceptance. Establish how much they have, and set a plan for discussion about it in the reasonable near future. After the MD/ARNP has seen the patient, they may be willing to let this go. If not, hospice company, suck it up and pay the $300 per month for this. It's not like you are hurting for cash.

6) Medications 3. Medications not related to hospice diagnosis are covered under medicare C or D. If the patient is choosing the hospice service for full medical management, I am more than happy to call these scripts in locally to be filled under their plan. If they continue to see their primary, I will call them in, or let the primary handle it, their choice.

7) Medications 4. Most medication issues are self-limiting. As the patient declines, their ability or desire to take medications will decline as well.

8) DNR. This is the big topic. Not every patient on hospice is a DNR. Not every patient should be, initially. We may think that, but they don't. This topic will return naturally, if prompted. But I don't think it's fair to beat the patient and family over the head with it. Worst case scenario.... someone in the family will call 911, EMS will arrive and do the usual, and they will be pronounced in the ER, or placed in the ICU on a bunch of tubes. But, I can tell you from experience that if you build rapport with the patient and family in the first few days, they will know when it is time to ask. The key is to encourage them to call hospice before 911. "We are here for you, 24 hours per day". Sometimes, if they are declining in the home quicker than expected, move them to the inpatient unit if you have one. DNR will usually follow close behind. Again, we believe this is right for the patient, the family and patient may not agree....initially.

9) Devices 2. What I do with peg tubes. I will continue to feed a patient through a feeding tube when the patient first comes on hospice, if that is what the family wishes. Don't put hospice in the position of "starving the patient"...initially. A food pump and supplies is pretty inexpensive. Usually, they will not tolerate the goal rate, which is a self-limiting problem. If they begin to have high residual, or diarrhea, the family will realize it is not working for the patient. It may take a week or so, but they will generally stop it on their own.

10) Devices 3. What I do with defibrillators. First, I ask if the patient intends to continue with their cardiologist. I will ask our medical records to get a copy of the defibrillator interrogation. I rarely address defibrillator on the first visit, unless the family asks. If they have had this for any length of time, they have heard what will happen if it fires. In my opinion, it can still be a life-saving device, even in the face of hospice. I have seen patients receive one or two shocks, which terminated cardiac death, and survive many more months. Once we establish a relationship with the patient, and determine that they are looking for comfort measures only, or simplifying their medical regimen, this can be addressed again. Worst case scenario.....patient begins to have tachyarrytmia and defibrillator shocks them. If it shocks them repeatedly, and they survive, send them to the ER. The ER can place a magnet on it and disable it, after seeing the rhythm on a monitor. Have it interrogated, and go from there. This is very individualized. Sometimes a bump in amiodarone or beta blocker may give that patient enough arrhythmia control to live a few more months, if they wish.

11) Devices 3. Drains. Sometimes a patient will have an implanted drain for ascites, billiary obstruction, urinary obstruction or effusion. Usually, they don't drain well, and often leak. We didn't put them in, but we have to manage them. If they leak, but don't drain, I usually place a colostomy bag over the whole drain. This fluid is irritating and annoying for the patient. If they drain a little, manually drain it about twice a week, but reinforce that it will probably stop draining altogether. If they don't drain or leak, encourage the patient to ignore it. Sometimes the family will ask to have the drain checked or replaced. I will usually send them for this, once. It is on a case-by-case basis, though.

12) Pain pumps. If a patient can continue to go to the pain specialist, let them. I coordinate pain management with them, but let them lead. When I see they are no longer able to have the pump serviced, I will ask the pain specialist for guidance on converting them to another route.

In my opinion, the goal of the hospice team is to guide the patients decisions. But, like an all-inclusive resort, we put quality, comfort and happiness above all else. Every case is unique, and every case takes time to evolve.

Edited by automotiveRN67

Agree that we don't need to use the term "hospice" but we cannot and should not be precluded from discussing end of life subjects with the hospice beneficiary. They have the right to discuss difficult topics about their imminent death should they want to, regardless of the discomfort that causes those who will survive the episode of care.

Absolutely. Most families who are not quite ready usually come around soon with some TLC - and especially when they see how well their loved one is cared for.

jeastridge, BSN, RN

Specializes in Faith Community Nurse (FCN).

To automotiveRN67: Thank you for your thorough and educational response. You have addressed many of the issues that come up with hospice care, both initially and as the hospice relationship progresses. Your last paragraph made me smile --you have a lot of insight.

CapeCodMermaid, RN

Specializes in Gerontology, Med surg, Home Health. Has 30 years experience.

We have several residents on Hospice at my SNF. Only one understands what hospice actually is. The others have end stage dementia and are probably not capable of understanding. It bothers me if the resident is alert and their family member forbids us from telling them either their terminal diagnosis or that they are on hospice. But after all these years I've come to understand that my ways are not necessarily their ways. We are as supportive as we can be.

jeastridge, BSN, RN

Specializes in Faith Community Nurse (FCN).

We have several residents on Hospice at my SNF. Only one understands what hospice actually is. The others have end stage dementia and are probably not capable of understanding. It bothers me if the resident is alert and their family member forbids us from telling them either their terminal diagnosis or that they are on hospice. But after all these years I've come to understand that my ways are not necessarily their ways. We are as supportive as we can be.

What you describe is a very difficult dilemma. When people are alert and oriented, I find they often know more than they verbalize. Do you find this to be true with your patients? Some of the older generation have some cultural views that are different from the younger generations in terms of "things we talk about" and "things we don't talk about." I wonder if you in your practice you see this too?

What you describe is a very difficult dilemma. When people are alert and oriented, I find they often know more than they verbalize. Do you find this to be true with your patients? Some of the older generation have some cultural views that are different from the younger generations in terms of "things we talk about" and "things we don't talk about." I wonder if you in your practice you see this too?

This is usually the case. Often, the family will say "don't mention hospice", because they think this will protect the patient from the truth. Reality is, the alert and oriented patient was somewhere when this diagnosis was made, and are well aware of their diagnosis. I am not sure there is a "generational difference". Older generations were much more aware of death than younger ones. Many of them were adults before modern medicine increased the odds of surviving common illness.

But, I do think we place way too much emphasis on the "you need to know what is wrong with you, what will happen, and how you will die" belief. I see people decline and die every day. I meet people with awful diagnosis and prognosis every day. But.... I see people who live longer than I think they should, and..... I see people who die sooner than I think they should. Our only role is to guide them to achieve comfort, happiness and closure. It is not my role to tell them how things will be, because I truly don't know.

...Oops, responded to the wrong thread.

Nashvillejeanne

Specializes in Hospice and Palliative Nurse.

Maybe I have a different take on this subject. I usually reply that I will not come right out and use the "H" word, but if I am asked directly I won't lie to a patient. I tell them I a specially trained nurse who provides comfort based care..... I always wonder if the famly are protecting themselves more than they are protecting the patient? What if at the end of your life, the people you love the most are the ones you can not talk to? How sad is that? When this situation comes up, I really focus on the famly and how they are dealing with this person they so afraid of losing.

PS: the patient ALWAYS knows....at some level at least!