Friday, August 21, 2015

The Lies of Hospice Patients

by Lizzy Miles

Hospice and palliative care professionals value honesty. We may be the only people in a patient’s life who speak openly about death and dying. There is no time left for us to speak metaphorically. We do our best to be compassionate when we are direct with our communication. In order to provide the best care possible for our patients, we have to build an open and trusting relationship with them. One might assume that since we are authentic with our patients, they are open and honest with us. We know, though, that this is not always the case. Recently, I wrote about the secrets of hospice patients. This article is a continuation of that thought with a discussion of the lies that hospice patients might tell us.

Before we go on, let's be clear that there is no moral high ground in the suggestion that hospice patients may lie. A lie, according to Webster's Dictionary, is simply "an intentionally false statement." It is my assertion that there are times where patients do make false statements to us, and they have their reasons for not being truthful.

If you are new to hospice and palliative care, you might be surprised to learn that patients might lie. If you have worked in hospice and palliative care for a few years, chances are you are nodding your head as you are reading this, with a recollection of your own patient encounters. I have been thinking about this phenomenon for a few years. As always, my articles are inspired by experiences and lessons I have learned as a hospice social worker.

Why do hospice and palliative care patients lie to us?

Perhaps the best way to answer the “why” is to reframe the question. When might hospice and palliative care patients lie? Patients might lie when they do not feel comfortable with telling us the truth. We have not built up trust so that the patient feels we are on their side. Patients may outright lie or they may lie by omission or understate the truth.

Here are some examples of areas of deception:

Current “bad” habits

There are several reasons why a patient may not be honest to a hospice caregiver about their smoking, drinking or drug habit.
1. Patients expect that their medical provider will tell them to stop what they are doing.
2. There is a fear of judgement/labeling by the medical provider.
3. Patients may not think their habit is the provider’s business.
4. A patient is ashamed or embarrassed by the habit.
5. There may be a perception that a truthful answer will result in an unwanted response from the provider.

Patients are not going to naturally understand why we ask questions about smoking, alcohol and drugs. We ask these questions because these habits can affect their plan of care. All three habits can affect how a patient responds to or metabolizes medication. If a patient is a smoker, we want to ensure that they are safe with their habit, especially if they are on oxygen. Before we ask questions about these habits, it would be helpful for the patient to know why we are asking. If we tell them why we need to know about their habits, we have a better chance of getting an honest answer.

Assessment/visit fatigue

In hospice and palliative care, we are constantly assessing. Every staff member that interacts with the patient is asking the patient questions. At times, the patient gets the same question from different staff members. A barrage of questions can be overwhelming for patients. We need to be mindful of the timing of our visits so that patients have a break in between providers as much as possible.

I had one initial assessment with a patient (Mr. J) which directly followed personal care by the aide and the hospice nurse visit. (Hospice social workers are tasked with conducting an initial assessment within five days, and so our timing can be unfortunate at times.) The patient I was assessing was irritated with his shower because movement hurt and he was in a bad mood when I started talking with him. I could not get a straight, honest answer on any question. He told me he had ten children, when in fact he had none. He refused to tell me what he did for a living. Every other word he said was a swear word. He was not in the mood to talk, and eventually, I gave up trying to win him over and gave him the space that he apparently wanted.

What they really think of us and/or our care

Sometimes our experiences when we are patients ourselves can inform our work. It took me three months to get in to see an opthamologist, and then the day of my visit, there were extensive wait times with no updates or apologies. The whole appointment took 4 hours, although my physician time was only 20 minutes. I was seething inside, yet I never complained. I felt helpless because I really needed to see this specialist. You would think I would be better at self-advocacy since I'm a social worker. Though I never said anything to the doctor, you can bet I told a number of people how awful my experience was. It was then that I realized there might be some of our hospice patients who don’t like us or something we have done, but don’t tell us.

Why am I bringing this up? Because we need to remember that a patient is not always going to tell us directly when they are unhappy about something. Occasionally, one staff member will hear from a patient about their dissatisfaction with another staff member, but I suspect there is more dissatisfaction than we realize. A complaint-free patient does not mean we have a content patient. We need to check in with the patient frequently, and give them the opportunity to direct their care. We do not want to have a situation where a patient is very unhappy and we did not know because they didn’t tell us and we didn’t see it. We need to read body language and we need to read between the lines with what patients say and what they don’t say.

How to build a trusting relationship

How does one build a trusting relationship with a hospice and palliative care patient so they feel comfortable telling the truth? This would be a great question for the #hpm tweetchat, as I am sure that there are lots of ideas. I do not claim to have all the answers, though I have often been told by patients that I am “authentic.”

Here is what I try to do:
• Ask permission for everything. Are you open to chatting? Do you mind if I take notes?
• Acknowledge the personal nature of questions. The reason I am asking is because…
• Take “no” for an answer. If a patient does not want a visit, I leave.
• Ask for permission to return.
• Be mindful of my nonverbal and verbal responses when a patient self-discloses.
• Normalize patient behavior and thoughts as much as possible.

Please do share in the comments your own best practices for building a trusting relationship for patients.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

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