Category Archives: The Beauty of Hospice

Hospice care is the most holistic form of care within medicine- physical, emotional, familial and spiritual. Who would want to miss out on this?

I grew up in just-post-segregation Alabama. In 1976, I was a kindergartener and my best friend was a little black boy named Kendall. We had a lot in common. I would chase him around on the playground and he would eat my crayons. Life was grand or so I thought, until my parents came and had a conference with my kindergarten teacher. The next day we were separated from each other in class. I remember crying to mom in protest saying, “But aren’t we ALL God’s children?”

I still feel the same way today. So, I’m extremely disheartened by the recent increase in racial tensions. But I have something very important to share with you…

Hospice care is the antidote.

IMG_4356

(This photo is of one of my local hospice nurses comforting her patient.)

Hospice is the one social institution in 2015 which contains the seeds of healing for race relations. You may have never had a black, white, yellow or red-skinned person in your home in your entire life. But, if you are a hospice patient, some human with a different skin tone may very well come into your home to love, serve and care for you in ways you didn’t know were possible.

Also, as we travel the end-of-life pathway, we have opportunities to allow old prejudices to fall away in insignificance. Relationship healing and deepening can occur at accelerated rates. Love and even friendship may blossom more easily.

The giving and receiving of hospice care may be one of the most powerful current reminders that “we are ALL God’s children.”

****************

Please share this message.

#healing #racerelations with #hospice

PS. My parents have long since grown out of their prejudices. No one needs to remain trapped by socio-cultural biases. We can choose a better way.

Most of the time I feel as though I am “running in quicksand” attempting to bring patients to a place of grace and dignity in dying. On occasion, there is someone who jerks me out of my quicksand and plants me squarely on stable shore and then proceeds to show me what grace and dignity in the face of death really look and feel like.

Please meet Mr. Jefferson. Continue reading

First, click here to watch my video recount of the “Hospice” ER Shift

Ok, well I am neither a good actor, nor producer but don’t let that stand in your way of receiving my message…Hospice care can be activated ANYWHERE within the healthcare system (and even outside of it) when the patient is ready!

The ER (besides the ICU and Surgery Suite) may be one of the most aggressive, intervention-focused areas in the house of medicine. So, if WE can do it, then ANYONE can do it (meaning, transition patients to hospice care when appropriate.)

Here are some tips from my Emergency Department:

1- Signage

ER docs like to look at algorithms. It’s the way we are trained, just open up any ACLS guideline and you will see what I mean. So, in our emergency department we have a sign at each doctor workstation which reads:

“Signs that a person may be ready for hospice care”

  • Weight Loss
  • Increased pain, nausea, fatigue or other symptoms
  • Increased need for assistance
  • Decreased alertness
  • Increased hospitalizations
  • Family exhausted from care-giving demands

(At the bottom of the sign are directions on how to make a referral).

2. Train your staff to screen for hospice readiness

My nurses ask all kinds of questions to patients during their initial screening:

“Do you have any religious, or cultural preferences that might affect your care today?

“Do you feel safe at home?”

“Would you accept blood products to save your life?”

So, you see, we are accustomed to asking deeply probing questions from the get-go, so why not also ask end-of-life screening questions:

“How many times have you been to the ER or hospitalized in the last 6 months?”

“Do you feel like your health is steadily failing with worsening symptoms?”

“Are you feeling tired from the amount of care-giving required for your loved one?”

Identifying the potential hospice-appropriate population goes along way toward getting them the care they need in a more timely manner.

3. Build relationships with local hospice providers

Our hospital has an affiliate relationship with a local not-for-profit hospice who serves as our preferred provider. RNs from this hospice have affiliate hospital privileges at our institution. So, if we call… they come. This takes a huge burden off of the ER staff in transitioning care– our role just becomes one of “screener”- we “screen” the patient and family for physical and emotional “hospice readiness” and then can simply call for a consultation.

OR, if we have a patient who desires another hospice who doesn’t have affiliate privileges, OR if we have a clear-cut, “I want to go home on hospice” patient, then we can simply call the hospice service of choice (make sure their numbers are readily available to the secretary) and have the hospice RN meet them at their home or home facility for intake.

NOT COMPLICATED!

So, the bottom line here is, if we can do it, anyone can do it.

How does your department or institution make hospice referrals easier? Please share!

 

 

My step-father likes to tease a lot. One of his favorite sayings is, “Even a blind bird sometimes gets a worm!” That’s what I feel like with this BIG tip that I am about to share with you…

You see, I serve on the Board of Directors for two non-for-profit hospices (Hospice Family Care and the Los Angeles Hospice at Anam Cara), so I know how hospices are always strenuously brainstorming on how to get more market-share and how to get more referrals. I have on occasion offered a few weak suggestions to which everyone responds in a polite but we’ve-already-tried-that-one kind of way. Let me assure you, this idea is different. This idea is one whose power I learned first-hand as a physician…

So, here it is…

Are you ready?

You’ll never believe you didn’t think of this yourself!

So, simple…

Just have the hospice patient and/or family write a personalized thank-you letter to the referring doctor!!!

Here is why this works. You see, as a doctor, and I know what it’s like to have drug reps and service marketers come up to me and try to get me to use the “best and newest” medication or the “best” service. Do you know what my brain does in response to these requests?

(Yawn…..) Then I think, “Hmm, did you bring donuts?”

OK. Now this is why my recommendation is so radically different…

You see, on the rare occasion that I get a “thank you letter” (and even more, rarely, a “thank you visit”) from a former patient or their families, something totally amazing happens to me.

I feel warmth in my heart. I smile. I forget that I am tired or hungry. For a moment, I think that I have the best job in the whole world… and most importantly, Whatever I did to make that patient or family “thank me”… whatever I did, well I want to do that OVER AND OVER AGAIN!! It’s like hitting the Jackpot in the physician’s heart! He or she will want to do “that” (ie. make that hospice referral) over and over again!

So, when the time is right, bring a pre-addressed stamped envelope bearing the referring physician’s name and office address to your hospice patients and their families. Say something along the lines of this: “If you are grateful for our services, please send your doctor a little thank you note so that he/she will know that he/she made a good decision by referring you to our care. We will even drop it in the mail for you.”

“Ah ha!” you are saying, “Why didn’t I think of that?” :)

thanks

–Again, doctors listen to two groups of people primarily, patients and other doctors. I am happy to be the “other doctor” who makes the argument for hospice as the way to best serve our patients at the end of life! I do this in the easy-to-read book, It’s OK to Die. Give it as a “thank-you” gift to your doctors! For bulk purchases of 10 books or more, the price drops to $8 per book with only $1 shipping per book (in the Continental US). Email me if you are interested in this discount: DrMurphy@oktodie.com

(Photo credit: businessnewsdaily.com)

Last week we introduced the idea of “fighting” or “embracing” death. We examined the definitions of death and dying, as well as the scientific, pharmaceutical, technological, TV-Hollywood, and musical contributions to our stereotypes. Now, let’s look at some of the remaining sources of death stereotypes, and read the author’s compelling personal story led to his present approach to life and death. Continue reading

 

Everyone suffers when communication fails at the end of life. Though we may “know in our hearts” what to do in difficult situations; anxiety and bias close us down. We lose our ability to say and act on what we know is best.

Physicians and nurses suffer when they “know in their hearts” that they are doing harm performing CPR on people at a natural end of their lives on people whose bodies can do nothing more than suffer and wherein all medical moves lead to more suffering and the patient dies anyway.

Families hurt when asked to make decisions in an unfamiliar setting, when they are paralyzed with anticipatory grief, and left without a roadmap and information that could help them understand their range of choices.

Patients suffer immeasurably when their last days are filled with probes and prods, jabs and shatters beyond anything they ever would have wanted to survive.

Who would choose that? Nurses and doctors want to help, care and comfort. Families want health professionals to help them verbalize what they “know in their hearts” and help them make choices that they can be at peace with. Patients certainly want dignity, care and comfort for the end of their lives; even if they can’t say so or didn’t document it in an advance directive… they want dignity, care and comfort.

At the end of life, most of us want to spend time together with loved ones in our last days and weeks; not in a hospital room, filled with eight other people hanging bags of blood and monitoring machines. We simply want to say what needs saying and do what needs doing before we breathe our last.

But people don’t get what they want. Palliative care conferences and hospice referrals are made way late to provide the benefits that are possible and way fewer people than are eligible and who would benefit by those services get them.

What would it be like if doctors and nurses knew how to guide effective end-of-life conversations that help people get what they want and be at peace? What if these conversations didn’t have to be emotionally draining, inter-personally complex or time consuming? And what if this were possible by going with the awareness of what we “know in our hearts” to guide these conversations? Here’s a true story of a conversation like that:

When I was a hospice director, there was a new admission and other nurses were busy, so I visited the 80-year-old man and his dying wife. The referring hospital and physician called hospice but had not told the husband and wife what to expect. No words on the patient’s prognosis.

The husband met me at the door, wringing his hands and asking, “Is she going to be okay?”

“Well, let’s go see,” I said, still standing on the front porch. He led me to his wife’s bedside at the other end of the neat, warm and cozy living room. She was sleeping deeply and appeared comfortable in a hospital bed set up there earlier that day.

While observing the resting patient, my practiced senses told me that she would live at least another few days or maybe a week if the disease took its normal course. Experience also told me that the husband ‘knew’ that his wife was dying. But no one had helped him to access that knowing yet.

So, after a silent moment or two, I looked at him and said, “You have been married to your wife for a long time. You know her better than anyone. When you look at her now, how do you think she is?”

He immediately dropped his head and said, “It’s not very good.”

I returned, “That’s right.”

Now that he had stated what he knew, he could be at rest and receive information about what to expect and how to handle the upcoming days.

“She’s not going to live as long as we would like, but you have some time yet,” I reassured him.

There we had it. He now knew cognitively what he already knew in his heart. Now he could act on that awareness and take the time he had left to do things he wanted to do and say what he wanted to say before his wife died. Now he could attend to her with keen awareness that these were the last days of their lives together.

Without that, he would have missed opportunities to deal with reality while hoping for a miracle that was never going to appear.

That conversation didn’t take long, and it can happen in an Emergency Room as well as in a home. I knew the patient was dying. He knew his wife was dying. She knew she was dying (patients who are dying know that). Acknowledging that opened up all kinds of possibilities that this man, his wife and their friends and family could get and give what they wanted in those last days.

Here’s another true story. This time I’m not a hospice nurse but a wife, soon to be widowed:

Both Josh, 60 and I, 53 knew that he didn’t have “six months to live”, though that’s what the first doctor told us. And I knew he didn’t have “weeks to live”, though that is what another doctor said. Doctors kept telling us we had more time than we did. We had 17 days from diagnosis to death.

Thanks to my hospice experience and sheer will, I got what we needed to have a good death at home, spending time with our children, sleeping together, time gathering with family and friends.

But I didn’t get what we needed from the best docs in town. I got it myself by calling hospice while a physician who thought I was jumping the gun admonished me for it. Really? I wasn’t riding a white horse. I was just trying to get our needs for information and comfort met.

But when at 2:00 a.m., an ER nurse who happened to also be a former nursing student of mine, caught glimpse of us after we had waited four hours in ER for a room upstairs; she wheeled his bed upstairs while friends and I, carrying cake pans full of medication, followed.

Then that sweet nurse disappeared. And the chaplain she had called for me appeared. He prayed beside me in the hallway while the hospital staff got Josh settled in his room. Then I began weeping from deep within. A grief I will never forget and never know exactly that way again. Writing the story today, five years later, the weeping returns.

The physicians knew he was dying. I saw a young hospitalist crying in the charting office outside Josh’s room just after she had visited him. She knew he was dying. Must have been heartbroken to see him and me, and to know that we had but a few days. But she never talked to us about it.

On what basis do we keep what we know from patients and families? On what basis do we deny families and their dying members the many things that they would do differently and better? On what basis do we sacrifice the living we could do today for the hope that tomorrow we won’t have to face death?

Many things families would do never get done at all because they just don’t understand the time constraints under which they are living – and no one helps them access their awareness of what they already know deep down.

Had we been in the hospice program earlier, had someone acknowledged what we already knew, or had someone asked and listened to us, we would have had more than seven of our last seventeen days at home with hospice.

We got to celebrate our tenth wedding anniversary at home though. Josh was comatose by then but the pastor who performed our ceremony a decade before came over to hear us renew our vows. Mary, our Matron of Honor, brought a rose, which I laid across Josh’s chest. A few friends also attended. I read aloud Josh’s vows to me and mine to him. He died two days later.

Because I’m an experienced hospice nurse, a researcher and a family member, I am profoundly aware that most people already know the truth of the matter when it comes to a natural end of life; and I know that it takes only a short conversation for clinicians and patients and families to get on the same page.

Research tells it to us too. But everybody knows it’s true, we don’t need science or stories to know what we know. We just know it. What we don’t know is how to go about talking about it.

So what does it take to have successful end of life conversations? Conversations guided by what everyone already knows in their hearts, conversations that get more of what everyone wants?

Begin by reminding yourself that we all know what’s going on. If you think that your time and ideas are worth more than the patient’s, you’re not ready to talk about death and dying.

Be sure that you have quieted your mind before you approach the people you are attending. Being-with patients and families in these conversations requires a spacious inner silence, which creates spaciousness for them. We breathe the atmosphere, so to speak.

Know that your patient and family already have an awareness of what’s right for them, but they need your support and quiet presence to access it. Their awareness will arise as a ‘sense’ of knowing. That’s what you want to learn from them.

Be mindful that what you are doing is asking questions that allow family and patient to access their awareness of what is true for them.

Open-ended questions work. “What do you think is going on when you see your mom?” Or “What’s most important to you right now?” are good quesitons.

Don’t worry about what question to ask. The right things to say will arise in your mind if your intention is to only understand what they know in their hearts.

Once you’ve asked a question. Be quiet and ‘wait’ for their answer. If you have that inner silence already, this will be easy. It may be more than a few seconds for them to come up with the answer.

They may have questions. Answer truthfully from what you know in your heart.

When everyone is on the same page, you’ll know it and then action can be taken and people can be at peace.

Practice all of this in non-threatening situations.

Make rounds with a colleague who already knows how to do this well.

Remember, this doesn’t take as long as we may imagine. Even in complicated situations with multiple family members, you can come to an understanding in less than a half an hour.

Sample illustrating a powerful, warp speed encounter:

Daughter to Hospice Nurse: I live in Milwaukee and I’ve been with Dad in New Glarus for a week now. Should I stay or go home?

Hospice Nurse: Well have you asked your Dad about what he thinks about that?

Daughter: No. How do I do that?

Hospice Nurse: When he wakes up from his nap, tell him that you’re thinking about going home and ask him what he thinks about that.

Daughter to Dad: Dad I’m thinking about going home. What do you think about that?

Dad to Daughter: You stay. I’m going…

by Dr. Virginia L. Seno

Founder, Esse Institute LLC

Rotary International Paul Harris Fellow
End-of-Life Communication Expert
End-of-Life Nursing Education Consortium (ELNEC) Trainer
Master Teacher

Access FREE Tips from the Mini-Course Mastering The Listening Self: Personal Growth Through End-of-Life Encounters

www.EsseInstitute.com

 

itsoktodie

Listen in as we discuss: personal stories of dying loved ones, why you should not show up to the ER without an advance directive, reasons that Americans avoid conversations about death, how the Declaration of Independence is relevant to end of life discussions, how to have a “good death”….and much, much more…

Listen here–Blog Talk Radio Interview by Audrey Pellicano, New York Death Cafe Hostess and Grief Specialist

1362064441

“Great show! Thank you both very much for sharing such powerful and needed information and for getting it into a book that is not only personal but offers so much practical information.
Let’s keep the conversation going!”
Audrey Pellicano R.N.,M.S.  CEO Wise Widow Grief Recovery Specialist  audrey@wisewidow.com | www.wisewidow.com

In 1918, if your little brother died in the influenza epidemic, it’s likely that you would have cared for him as he died, at home, and after he died, at home.

In the early 1900s, my grandmother helped care for her own mother in her own home, as she died of cancer. After she died, the family built a coffin and buried her.

This has been the normal pattern of dying and after-death care for all of human history until very recently, as death has become transformed into a life-cyle event which is managed by specialists. Continue reading