Palliative Care Nursing vs Standard Care Nursing

I do believe that Palliative Care Nursing is very different that Standard Care Nursing.  I should clarify that this is NOT the case if we are solely looking at nursing as "task-based", but since that is what we are being trained NOT to do, the two types of nursing are very different.  Task-wise, we are providing the same types of nursing care to standard or palliative patients.  We are assessing, implementing, evaluating, and all that other good nursing process stuff.  We are doing good, we are not doing harm, we are respecting our patients and their families, as well as their beliefs.  We are providing adequate pain relief.  We are advocating for them.  We are doing all of this no matter who our patients are, how old they are, or what their ailment is.

What is vastly different about Palliative Care Nursing is that patients receiving palliative care are often on a very long road, paved with a constant and underlying grief.  There is a tremendous level of strain on the patient and also on their family.  This strain is not just related to straight caregiving and sleepless nights.  It is the strain of knowing that your child has a life-threatening illness.  It is the strain of knowing that your relationship with your spouse is much more likely to fail than to survive.  It is the strain of knowing that it is not worth it for you to work anymore, because hiring a private nurse for your child will cost more hourly than you make at your job.  It is the strain of having one foot in this world of the present, and one in a world where your child is no longer living.  As nurses, the way that we provide care for these children and their families MUST be different than the care which we provide for an otherwise healthy child who is in for, say, a tonsillectomy.  We MUST take into consideration what this child and his or her family are going through on a daily basis-- even on the "good days".  This is long-term care.  This is an opportunity to develop relationships, to be the one person that a parent caring for a sick child talks to in a day, to make a difference in the lives of people who I believe need it more than anyone I can think of. 

As you can see, I am fired up about this issue, largely because I am one of these parents.  My son Theo is a palliative care patient, and he always has been.  The difference between the nurses who "get" this and the ones who don't are indescribable.  It is hard to explain what the difference is, or what they are doing differently.  It is a certain presence, a certain openness, a certain way of being.  I suppose that ideally we will carry ourselves with this level of grace, generosity, understanding, and compassion with all of our patients, whether they are deemed "standard" or "palliative".  But I urge you to think a little bit about what it is like to like in this straddle between worlds, and really go the extra mile for your palliative patients and their families.  I know I will...



Quality of Life

A value which I grapple with is the notion of what comprises a good “quality of life” for a child living with chronic illness.  This is a personal issue for me because my nine-year-old son is living with Hypoplastic Left Heart Syndrome, a condition which still exists within a gray area in the realm of medical ethics.  (Williams, et al., 2000)  For me, when I look at my child, all I see is my child.  The thought of someone thinking of his everyday life, which I deem as exceedingly happy, as being one which is of poor quality, is unfathomable.  For his heart condition, he has had three open heart surgeries, and used a nasogastric feeding tube for the first five months of life, followed by a gastric feeding tube until the age of four.  He takes oral medications twice a day, gets blood drawn once a month, and goes in for a Cardiology workup twice a year.  His repairs are considered palliative, and he will undoubtedly need more medical interventions as he gets older, but he looks and acts “normal”.  He is intelligent, friendly, active, and is about to start his fifth season of Little League Baseball.  He enjoys skateboarding, cooking, swimming, and writing.  In my mind, this is not a shabby life.

Quality of life issues surrounding my son’s condition were most recently brought to my attention at a January 2010 conference in Long Beach, CA, put on by the Initiative for Pediatric Palliative Care Coalition.  I was a member of a parent panel, there to answer clinicians’ questions and allow them some insight as to what the experience of parenting a chronically ill child is like.  At a “breakout session”, I chose to attend a discussion being led by the head of the PICU at Packard Children’s Hospital, Dr. Lorry Frankel.  The title of his presentation was “Medical Futility: What Are Our Options?”  Knowing that this presentation would likely touch on issues which would interest me as a Hypoplastic Left Heart parent, and also wanting to support Packard, our “alma mater” hospital, I sat in a room of doctors and nurses and listened to Dr. Frankel’s presentation unfold.  He chose to do his entire presentation on Hypoplastic Left Heart Syndrome, and showed a series of slides which included pictures of very sad and sickly-looking children.  He spoke of the cardiac surgeons, eager to add another notch to their belts of “lives saved”, who paint a rosy picture to parents and don’t portray the truth of what it will really be like to live with this condition:  the feeding battles, the ongoing surgeries and interventions, the financial burden, the ruined marriages, etc.

I listened as the majority of clinicians in the room expressed disdain that parents keep these children alive and make them suffer.  I felt like a fly on the wall, and finally got to a point where I could no longer be a quiet observer.  I needed to speak up; it was time for me to tell the other side of the story and dispel the myths.  I raised my hand and announced that my son was eight years old, and living a very happy life with Hypoplastic Left Heart Syndrome.  I agreed that it was not always an easy path, and that it was fraught with all of the aforementioned issues at one time or another, but that as they could see in the copy of HOPE Magazine, which they all had in their conference materials, the pictures of him were nothing like the ones being shown.  (CHPCC, 2010)

I do not live in denial.  I know that my child has suffered, and will suffer more.  But I also know that he appreciates his life.  As a nurse, it will be hard to see parents terminate HLHS pregnancies, or opt not to pursue treatment.  It is hard for me to hear people use “feeding tubes” as a determinant for someone’s quality of life.  It is hard for me to know that some people look at my son as someone whose medical condition deems his life unworthy of living.  I will need to put my own personal experiences aside and respect whatever decisions my patients and their families make.  (ANA, 2010) Everyone’s determination of what constitutes a good quality of life is different.



Hospital Time

     There is something in me that is reserved for this.  Some know-how, some strength, some little corner of my mind, my heart, my energy, my will, reserved solely for Theo being in the hospital.  Earlier today I was overwhelmed by homework and laundry and Christmas cards.  Who knew that by the end of the night I’d be sitting here in the ER at Theo’s bedside, watching him doze off, resting the old familiar hospital bedrails in the corresponding contours of my body’s nooks and crannies.  I used to have this down to a science.  A stuffed animal was the perfect bedrail pillow, the ideal protector to valiantly stave off a sore arm. 

    The rise and fall of Theo’s sleepy chest, the curves of his wide brown feet, miniature versions of mine, the way he lies with one arm under his head, to shield from the harshness of the starched white hospital linens—we are experts.  There is a part of him reserved for this too.  I imagine us, as we put on our hospital-mode capes and gallop off toward the direction of wellness.  Into the sunrise.  The colors are blindingly beautiful.  We were cut out for this.  For this, together.  Honey-colored eyes look to me for answers.  I can see that they trust me completely.  Even in a scary place, he is at ease here with me.  And I am here, in this moment.  Ready to fight, to float, to appreciate it all.

Hope Magazine Article/Sharing Wisdom

http://www.childrenshospice.org/hope-2010-articles/13-SharingWisdom.pdf

BY LISA BUELL AND TARA MANJUNATH

Sharing Wisdom is an online resource dedicated to families, clinicians, and community members interested in supporting and understanding how parents navigate the life of caring for their seriously ill children and the waters of grief. Two moms, Tara Manjunath and Lisa Buell, share their courageous stories of life, loss, and hope.

This article was featured in the 2010 copy of HOPE, an international award-winning magazine published by Children’s Hospice and Palliative Care Coalition and funded by the California HealthCare Foundation.  HOPE is designed to bring awareness to the issues that surround healthcare for children living with serious, debilitating illnesses and their families.  If you would like to receive a copy of HOPE, please e-mail Pam Peck at pam@childrenshospice.org.

The effects of grief

It never ceases to amaze me how long grief affects us, as humans.  It is so crazy how even years after a traumatic event, the memories of it live within us.  And I don’t mean that they live within us on a daily basis necessarily, or that we think of them all the time, or that we are even conscious of the fact that this is happening.  I mean that there are things which live in our unconscious.  Things which live in us viscerally, sitting on top of our organs and waiting to attack at weird and inappropriate times.  Things which will never let themselves be forgotten.

I am going to write about something I don’t usually write about, something which fills secret parts with a secret grief.  Not the obvious grief I have gone through around having a sick child, but the shameful grief of having a sick relationship.  Of putting on a smiling face and having people think we were a cute young family, when behind closed doors I was being yelled at and cursed at on a daily basis in front of two tiny children.  I would be home all day, catching Theo’s chemo barf, nursing Tommy, and changing two sets of diapers, and then the real hard part would start at 5:30, when Matt got home.  It is embarrassing to know that I let myself be treated so horribly.  That I stayed in it for so long.  But I was kind of trapped, with a cancer child and a newborn.  My work was taking care of them.  Retrospectively, it’s all a copout.  Retrospectively, I could have left much sooner and gone and stayed with my parents or something.  Retrospectively, there was no reason to stay.  Retrospectively, I thought maybe once all the hard parts were over and Theo was better, Matt would get better too.  But no.  And lots of the damage in me is just starting to heal.

I couldn’t cry for years.  I mean really, I thought my tear ducts might have little tumors blocking their openings or something.  I would put on sad music and watch sad movies just to try and cry.  No luck.  It is only lately, being with a man for the first time in almost four years, a supportive man for the first time EVER, that my little tear ducts have started working again.  I can cry now.  The little grief balls which sealed my tear ducts shut for so long are gone now.  There are other ones inside of me though.

I still get worried that I will get yelled at.  All the time.  If I do something wrong, I wait for the other shoe to drop.  I accidentally squirted a packet of Taco Bell hot sauce onto Charlie’s white t-shirt on our way back up the coast this week, and instead of yelling and swearing at me, like Matt definitely would have done, he joked that he was wearing a tie-dye now.  The joke appeased the wave of fear which had instantly peaked inside of me.  There are countless examples of this.  Almost every day something will happen, some normal everyday occurrence which I would have been yelled and sworn at for in the past, and it is only when I feel that fear and then realize it isn’t going to happen that I chip away at the grief balls, and realize that there was nothing normal or OK about that.  I knew it was bad, I knew it was damaging, but I didn’t know how deep it all went or just how bad it was.  It is only now, years later, having positive and happy experiences, that the contrast jumps out and snags me.  It grabs me, and it shakes me, and it rocks me, and it bites me, and then I realize even more how fucked up it all was and how much better it is now.  No one should ever let themselves be treated like that.  Grief, for him, was an excuse.  I guess it was for me too.