Advanced Practice Hospice Nursing

I have started back to school this fall. I've decided to get my Master's in Nursing. There are very few Master's programs in Palliative Care nursing. I suspect there will be many more as nursing schools and medical schools are enlightened as to the significance and the level of knowledge it requires to give quality end of life care. In the meantime, I will have to make do with getting my CNS in Oncology. I was a little less excited than I would like to have been when I went to Orientation today. In my class of ten, I am the only one who is primarily interested in end of life, though there are a few with minor interests in the subject. We have the option of doing some clinical hours this first quarter or waiting and starting them next quarter. Since I will be bombarded with oncology info, I decided to go ahead and start my clinicals. I'm hoping to set up a preceptorship with a woman I've heard runs a five star palliative care program at a nearby hospital. Wish me luck!

The Ghost of Grief

Wow. I have been getting such in depth juicy comments to these posts. I am learning so much from my readers. Thank all of you for your comments! I love any and all comments.

Last night, when a patient of mine died, his wife who had been at the bedside was overcome with her grief. She had been crying on and off at his bedside all evening. She called me into the room when she thought he'd stopped breathing. She started sobbing audibly when I told her that I heard no heart nor lung sounds. Her family arrived shortly thereafter and began to comfort her. I left to ask the doctor to come to the floor to officially pronounce the death. When I came back into the room, the wife was losing consciousness. I ran towards her and her friend and I eased her onto the ground, where she remained for the next five minutes. She would not respond to verbal stimuli and would barely open her eyes to a sternal rub (the standby when you aren't able to arouse someone). When she was able to talk again, she immediately asked, "How is he?" I was hesitant to tell her, seeing how she'd responded when she first heard the news. I calmly filled my voice with as much sympathy as I could bring into it and told her, "I'm so sorry. He's gone." She immediately began wailing and moaning again. She then reported chest pain and had to be sent down to the emergency room without having said her final goodbye's to her husband.

Grief is powerful. I have a different patient in that same room tonight. In a comment, Mari had stated that she felt like "ghosts" of experiences and emotions lingered in places, but that these "ghosts" were somehow different from souls or spirit kind of ghosts. For me, my body definitely felt a reaction to being in that room again. Though I have witnessed numerous people dying in that same room, this ghost of grief definitely feels specific to my own personal feelings about yesterday's experience. The new patient resting in that room doesn't seem to be aware of anything unusual. Though, in the room next door, where many patients have also died, we have had at least a few reports of people feeling that the room was haunted somehow. Interesting to ponder.

The Dementia Wrench

Mari and I were discussing dementia and dying. How can one believe in a soul when they watch their loved one fade away over a period of years due to dementia? My experience with dementia is somewhat limited. My great-grandmother developed dementia and I witnessed her living with it over years, however I was so young, that I don't recall what she was like before the onset of dementia. I also have worked with numerous patients in the hospital whom have had dementia, however, once again, I didn't know them before they became demented.

I don't claim to truly know the answers. But these are the thoughts I've been playing around with...

Can the soul (if there is one) really be lingering so long after one loses one's mind? Though that could be asked of anyone suffering from any illness - physical as well as mental. People in comas, people who lose their ability to communicate for whatever reason. But I believe yes. There is a wiser presence within us - that we access whenever we have the courage and/or ability to - that exists for all. I believe that our brains both make life meaningful as well as hinder us. Our lives are spent trying to overcome our own thoughts in a way - through meditation, yoga, psychotherapy, prayer, addictions, whathaveyou.

JennyNYC wrote in my comments section of my Is There Life After Death? posting:

"Psychology comes into it too. Someone in a coma might exert energy not to "let go" until comfortable. People in comas function at some level; otherwise, they'd be dead."

Yes, I will definitely - without a doubt - acknowledge there is a very strong component to the dying experience that is a psychological process of letting go of this life. However, through watching so many people die, I still think there is more to it. Again, back to the dementia - or in the case of brain death this might apply. These patients don't necessarily have the brain physiology to understand on a psychological level what is happening - they can't even tell you where they are, let alone why they are in the hospital. Yet there is a part of them, a wiser self, that seems to reside beyond the limits of their physical brain power that responds to the experience of dying (as I described in the last post - i.e. waiting for people to arrive before dying - people that in their dementia they may not even be able to identify if looked at).

So I say all this for the sake of exploring the subject. I'm still not sure what I believe. But dementia certainly complicates the beliefs that I've had in place until now and still provides ample food for thought.

JennyNYC: "What do you make of all the people who deserve to have closure but die without it? All the people who die with unresolved circumstances, with unfinished business? What accounts for the difference?"

Luck. lol. Though, really that may be a big part of it. Of course, this is complicated by several factors - some people don't want to deal with their death consciously enough to face their unfinished business. Others may cling to life, even after horrible accidents, desperate to resolve conflicts from this life. I think 1) some of these conflicts are then resolved internally without the people involved needing to be present - just as they are in our lives, in general. The cliche of our life passing before our eyes could be a quick attempt to find resolution from within. 2) We die as we live. If we've lived in denial much of our lives, we may be willing to die with that same denial. I think reincarnation is possible. That might explain these unresolved issues then needing to be resolved in a next life. Who knows? But accidents happe: plane crashes, murder, drowning. We are not all given the luxury of time at the end of our life. That said. I think it's important to contemplate our death in this life. Not to be morbid and morose. But I believe it is important not to wait until our time is up to find those resolutions. Make ammends today. One can never know what tomorrow will bring.

Is There Life After Death?

My friend Mari wrote a comic called "Is there Life After Death?" (See her link in my sidebar). This piece reminded me of an essay I’d written for a philosophy class in college on this same subject. I can’t find the essay, but started pondering over my beliefs some more.

Seeing people die - watching as they leave this world - definitely makes me feel more strongly that there is something more than this life, but I have no idea what that might be or mean.

I met a patient recently who was waiting for a biopsy result that would tell him whether or not he had cancer. As he sat with the anxiety of his wait, he told me about his beliefs and how they’d come to him during an LSD trip. And the funny thing is that is the same time that I decided there was some kind of after life. I had this profound revelation while on acid - this was the summer after high school. I stopped using LSD after that, but my beliefs definitely stuck with me through the years. During a seizure caused by an overdose, I had a vision of white sparks of light that were connected to each other – as we all are connected to all living things. And there was a larger light that all the other lights were connected to as well. As I woke up from the seizure, I immediately decided that when we died, we went back to that light and when we were born, we were born out of that light. There was a constant flow of energy from the main light. Some people may call that light God, though I am not comfortable with that word. I have too many negative associations with that word after having survived Catholic school – visions of an old white man with a grey beard sitting in a cloud making judgments about me.

This job also makes me believe in some kind of afterlife that is at least to some degree tied to this life. For example - people can be demented, can be in a coma, but they'll still stay alive until things from their life are resolved. It's like there is a spiritual self that is not trapped in the confines of their comatose body or demented mind that understands they are dying and wants to leave with their life in a sense of peace. When an estranged family member arrived, the patient who had been in a coma for about a week died an hour later. When I suggested the adult children give their demented, comatose elderly mother permission to die while they were at home, they had a very tearful goodbye and the patient died about an hour after they left her bedside. The physical brain of these dying patients does not seem like it should have 1) the ability to hear and comprehend what the family members were saying (especially the patient with dementia) nor 2) the control over when to die that these patients clearly seem to have, hanging on until their business in this life is finished. But the question remains – what happens after we die? Our body decays and that’s it? Or does the energy that once was our body get recycled into soil to feed a plant and that is the spirit reborn? Or is there some fragment of our person captured in that energy that leaves our body at death? What do you think?

Who Are Hospital Chaplains?

Generally speaking, hospital chaplains:

-Have training in theology, counseling, psychology, and dynamics of disease with spirituality
-Are easy to talk to
-Offer counsel, support, comfort, prayer, and/or spiritual guidance based on whatever you believe and value
-Help you work out problems or issues that are troubling you
-Can connect you with someone ordained within a specific religion or denomination upon your request

Chaplains do NOT:
-Preach at you
-Attempt to convert you to any specific religion

How to best utilize the Hospital Chaplain:
-Relax and be yourself
-Tell them your story and concerns


Specifically for Patients Who Are Dying & Their Families

-Facing the impending loss of someone you love can bring up lots of emotions. In addition to the expected sorrow, family members and friends may experience feelings of anger, hurt, and/or guilt. You may want to talk to the hospital chaplain about some of these feelings, including your obstacles to forgiving others and forgiving yourself.

-Please let your nurse know if you have any special religious or cultural needs related to end of life, so that we can be certain to contact the chaplain in order accommodate these wishes in a timely manner


Although all hospital chaplains go through extensive training, credentials are no guarantee of quality. Chaplains alternate with the change of shifts. If you find you do not click with one chaplain, you may feel more comfortable with the next chaplain who stops by for a visit.

Compiled from the following websites as an educational tool for patients:
Handbook for Mortals
Last Acts

What is Spiritual Distress?

Not too long ago, the words “religion” and “spirituality” had the power to turn my stomach and throw a wall up in my mind to any further communication with the source of the words. But working with people who are dying can have a profound effect on people. Well, at least it has on me. I still do not consider myself “religious.” I do not follow any doctrinated religion, but I have a stronger sense of and acceptance for the presence of a spiritual side to myself.

One of the components to working with people who are dying is a spiritual aspect to their care. In nursing, we have what are referred to as "care plans" and "nursing diagnoses." These diagnoses are not based entirely on biological processes happening on a physiological level in the patient. Nursing diagnoses are more interdisciplinary. They take into account the person as a whole.

At my job, we have a care plan specifically created for “Dying Patients.” The last nursing diagnoses listed in the care plan is “Spiritual Distress, Actual or Potential.” On the care plan, the nurse is to select which diagnosis is appropriate for each specific patient. At first, I ignored the spiritual distress diagnosis, partly out of discomfort and partly out of uncertainty as to how I was to assess whether or not the patient was spiritually distressed. Then I started to realize the great resource that the hospital’s chaplain services is. Once I started utilizing their services, I felt comfortable selecting spiritual distress as a diagnosis and then wrote in “Referred to chaplain services” as my intervention. Lately, I have once again dropped using this diagnosis. I am not sure why. If I knew that I was going to die soon, I would certainly be experiencing spiritual distress. But what does this mean?

I found a spiritual distress care plan
online that is helping me understand this better.

It states that spiritual distress is evidenced by:

-Questioning the credibility of my belief system.
-Demonstrating discouragement or despair.
-unable to practice usual religious rituals.
-ambivalent feelings (doubts) about beliefs.
-Expressing that he/she has no reason for living.
-Feeling a sense of spiritual emptiness.
-Showing emotional detachment from self and others.
-Expressing concern, anger, resentment, fear - over the meaning of life, suffering, death.
-Requesting spiritual assistance for a disturbance in belief system.

I don’t necessarily agree with all of these assessments as evidence of spiritual distress. Some of these symptoms seem more like signs of depression. And detaching from others to some degree is a normal part of the dying process.

There are some better websites on dealing with spiritual distress of dying patients. See...

Spiritual Distress of Dying Patients

Nurse Practitioner's Approach to Spiritual Distress

How Do Nurse's Provide Spiritual Care?

In the latter website, the author states:

“Govier (2000), has identified the five R's of spiritual care:

-Reason and Reflection - A desire to search for, or find, meaning and purpose in one's life; the will and reason to live; to reflect and meditate on one's existence (may be enhanced through art, music or literature)

-Religion - A means of expressing spirituality through a framework of values and beliefs, often actively pursued in rituals, religious practices and reading of sacred texts; religion might be institutionalized or informal

-Relationships - A longing to relate to one's self, others and a deity/higher being (may be expressed via service, love, trust, hope and/or creativity) ; the appreciation of the environment

-Restoration - The ability of the spiritual dimension to positively influence the physical aspect of care (certain life events can be detrimental, resulting in spiritual distress) “


When I told my mother I was interested in working with people who are dying, she was surprised. “But you aren’t religious. How are you going to support them when they want to pray?” It is actually just by nature of my not having any one religion that I feel unbiased enough to support any patients with any religious beliefs. I do not judge their beliefs nor try to impose my own.

I quote that same article:

"Govier (2000) cites a study by Amenta and Bohnet (1986) that suggests the use of four tools to help nurses implement spiritual care:

-Listening in an authentic manner;
-The actual presence of the nurse;
-The ability of the nurse to accept what the patient says; and
-The use of judicious self-disclosure"

I have struggled with trying to figure out what it means to assess that a patient is in spiritual distress and I’ve pondered what I could possibly do about it. And have realized only recently that this job has awakened me out of my own state of spiritual distress in a way. I do meditate for a moment or two before entering my patient's room so that I am fully present with them. I strive to listen to my patients with a peaceful and open heart.

I became conscious of these behaviors through lectures by Christine Longaker. She was talking about caring for people who are dying. These behaviors were suggested outside of a spiritual or religious context. That may have been the only reason I was able to hear them at that time. But in striving towards this goal of being at inner peace when working with these patients, even I – being the semi-agnostic that I am – now realize I have been addressing spiritual distress without even being consciously aware of what I was doing.

There has been an interesting side effect for me. I have become much more open to picking up whatever bits ring true for me from any religion. Having grown up Catholic and thinking of myself as a “recovering Catholic,” references to Christianity have been the strongest triggers for my animosity and walls. But I am even finding myself able to appreciate writings that come from Christian sources, such as the quote below, that I heard while watching a movie this evening:

"Lord, make me a channel of Your peace,
that where there is hatred, I may bring love,
where there is wrong, I may bring the spirit of forgiveness,
where there is discord, I may bring harmony,
where there is error, I may bring truth,
where there is doubt, I may bring faith,
where there is despair, I may bring hope,
where there are shadows, I may bring light
and where there is sadness, I may bring joy.
Lord, grant that I may comfort, rather than to be comforted,
that I may understand, rather than to be understood
that I may love, rather than to be loved.
For it is by forgetting self, that one finds
it is by forgiving, that one is forgiven
it is by dying that one awakens to eternal life."
- Saint Francis

Learning to Cope with the Grief of Others

How do you cope with witnessing the grief of others regularly in your work? This was another question posed in the comments section of one of my previous posts that I thought deserved a posting of its own.

Grief feels like a well deep inside me. The smallest sadness can blow off the lid on that well and it's like there is a bottomless hole filled with tears that is suddenly exposed and all my old grief is reawakened. The more I let myself cry freely, without trying to hold it in, and the more I take that lid off, however, the less traumatizing it is when I am sad again. I watch Six Feet Under and cry almost every other episode. I cry at the endings of happy movies. Perhaps this is why I am so addicted to watching DVD's every night off. They let me feel safe accessing the sadness.

Through my job, I have witnessed people coping in various ways with their grief - from directing anger towards me (in one instance in particular) to dramatic displays of loud wailing by mothers and wives. Their grief could be heard throughout the entire hospital ward. Then there is the silent but heavy weight of some loved ones' grief as they stand quietly at the patient's bedside. However, some people seem to be either at peace with their loss or in the denial stage of grief.

Are you familiar with the five stages of grief? Of course, the stages are not necessarily experienced one at a time nor in any particular order.

1. denial
2. anger
3. bargaining
4. depression
5. acceptance

In my job, I have seen all five. When that one family was angry with me, that was the most difficult. I knew on an intellectual level that their anger was a normal and healthy part of processing their grief. But I was also having a hard time with the loss of that particular patient and a part of me was blaming myself for her death (though I knew if she hadn't died during my shift, she would have died within the next few days). So when the family member's grief is complicated by my own personal feelings, coping with the grief of others can be especially difficult.

However, most of the time, I see working with these patients and these families as a form of meditation in a way. Before walking into the room, I focus on bringing my mind and spirit into a state of peace so that I may be stable within myself to serve as a source of strength and stability for them in their time of vulnerability and need. And perhaps by bringing that peace within myself into the room, I hope that it may be contagious and have a calming effect on the grieving.

The first time I cried while at work was during a visit to a family in their home (I was doing clinicals with a home hospice program). I was on my way out the door. I knew the patient would die in the next day or so. The patient's husband walked me to the door. I wanted to say something, anything to support him. I knew it was likely I wouldn't see him again, as I wouldn't be back until the next week and I was certain his wife would have passed before then.

"I want you to know you are doing an amazing job taking care of your wife." And he was. He was very loving in looking after her and giving her medication. Everyone should be so lucky as to be surrounded with such love in their final hours.

He looked at me and almost shrugged, "She's my life."

The tears welled up in my eyes immediately and I threw on my sunglasses to cover them up as I walked out the door. I met my preceptor back at the car.

"How do you do it without crying all of the time?" I asked her.

"Oh, I cry. Some patients affect me more than others. It's okay to cry. It shows them that you care."

I have never forgotten those words. Tears have come to my eyes again in certain situations with specific families. Crying is not bad, however, you may not fall apart. You don't want the family to feel the need to comfort YOU. So although, I feel a sense of inner calm, I do not try to deny my feelings as they come up. I was worried if I cried at all, I would fall into a sobbing puddle.

The only time I cried that hard was the time the family was angry with me and I was blaming myself for the patient's death. But I didn't fall apart in front of that family. I went to the bathroom and cried until it all came out. Then I went for a long walk outside to pull myself back together before I went back in that family's room. In this case, I hid my feelings a little too much. By covering up my feelings after falling apart, they likely got the sense that I didn't care, which probably enabled them to continue directing their anger toward me. Though I did go back into the room and offered my condolances, I think they needed something more. More solid evidence that I cared and their mother wasn't just an everyday occurrence in my job.

Obviously, coping with other's grief is not something I have mastered yet. I am still learning.

I welcome your stories on learning to cope with other's grief.