The mission of the hospice and palliative care is to ease patient suffering

Until recently, I had but the vaguest idea of what hospice and palliative care and medicine (hpm) entailed.

Until tuning into the #hpm Twitter group  – hospice and palliative medicine – both words conjured a gloomy atmosphere of despair, grief, anger, pain en route to dying. I wondered at those working in the field: they must be a bit weird.

I now know differently, and it’s quite the opposite. The mission of the hospice and palliative care specialty is to ease patient suffering, to make patients comfortable, and to help patients and their families feel peaceful at the most painful possible time in their lives. Easing suffering is more than pain (although pain control is certainly a priority) it also encompasses meeting emotional, spiritual and cultural needs — both the patient’s and their families.

Palliative care, in my own words: Whether or not I’m dying immediately, or have a progressive condition like ALS it is the palliative team who will help make me feel comfortable, and ease my suffering; spiritual and emotional as well as physical.  Palliative care can even take place in my own home. Research is proving palliative care in cancer treatment helps speed recovery, especially when put into place as early as possible after diagnosis.

Hospice care, in my own words: If I were dying, the hospice approach — which often includes palliative care — is to ease my suffering, and ensure my end-of-life is as comfortable and peaceful as possible.

How awesome is this?

What a relief for me to know there’s a team whose passion and purpose is to make me comfortable, should I be beset by a pain-filled illness/and or dying. And what a blessing for anyone I know and care about.

I’m happy that, through twitter, I’ve found Canadian Virtual Hospice whose mission is to provide information and support on palliative and end-of-life- care, loss and grief.  With articles addressing issues such as rituals throughout the process of dying and death, and emotional health, virtual hpm experts are also at the ready to answer questions.

While I’m still wrapping my head around the extent of and expertise involved in both, I am coming to know and appreciate the people who work in hospice and palliative care. My learning is largely through listening to and learning from the #hpm twitter group  – standing for hospice and palliative medicine on a Wednesday night hour-long tweet chat. Headed up by Christian Sinclair, palliative medicine doctor and blogger, everyone who participates is passionate about their goals and objectives.  They are also super-sensitive to small but hugely important details, things like being aware of their own body language in patient care, tone of voice and touch.

Listening to the tweet chats makes me wonder about the emotional toll such intense, specific caregiving would take, and I am once again amazed, as I often hear that hpm-ers say they feel their lives have been enriched by their experiences, although they often face conundrums — and attendant emotions — for which there is no right answer.  Along with compassion and empathy, strength, and humor, resourcefulness, respect and good communication skills, I believe those in hospice and palliative medicine must also have a special gene.

Thanks to the #hpm twitter community, for helping me learn – about these two distinct yet intertwined specialties, and about  you and your passion.  In turn, hopefully, I can help educate towards dialing down the anxiety often brought on by those two words.

Kathy Kastner is Founder and President of Ability for Life.

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  • http://www.healthybalancedlife.com Ann Becker-Schutte

    Kathy,

    I have only gotten to participate in #hpm chat a little bit, but I’ve done therapy during serious illness and end-of-life. From a therapeutic perspective, there is so much powerful, transformative work to be done when individuals and families are facing mortality.

    Thanks for sharing your perspective–glad to have you as an #hpm advocate.

    Warmly,
    Ann

    • http://www.ability4life.com kathy kastner

      Hi Ann, Sorry to be so long in responding to your lovely comment.
      About transformative work: one of the amazing things about this community is its role in my own transformative journey. I get to learn, ponder, question, consider, clarify, reflect – about what’s important in death but more relevantly (since I’m in good health) life.
      What a gift! (I feel another post coming…)
      Thanks again Ann,
      Kathy

  • http://www.elderpagesonline.com Tasha Beauchamp

    I became a hospice volunteer in 1997 precisely because this was the type of health care I could really get behind. Hospice folk are the angels of healing. It takes a special kind of person to work with the dying day in an day out. But hospice is a special kind of care.

    For instance, the “unit of care” is both the patient and the family members. The staff works as a team with doctors, nurses, chaplains and social workers (to name just a few) to be sure that the broad spectrum of physical, emotional and spiritual issues are addressed.

    I can’t say enough about hospice and how much it serves as a model I’d love to see throughout medicine, both in the structure, and in the spirit of those who work in the field.

  • http://www.palliativecarevideo.com Debra Jarvis

    Ultimately all health care should be palliative care, right? Meaning that palliative care takes into consideration what the goals are for your life (no matter how long) and taking care of symptoms. But for NOW palliative care is similar to hospice but is used much earlier in the trajectory of an illness. I made a 12 minute video called Palliative Care: Improving Quality of Life for People with Serious Illnesses. In October it received an Award of Merit from the City of Hope. You can watch the entire video at: http://www.palliativecarevideo.com

    Enjoy!

    • http://www.elderpagesonline.com Tasha Beauchamp

      Thank you for sharing your video. Indeed, I can see why it won an award. It gives a superb explanation as well as offering a variety of perspectives (from patients, physicians, chaplains, etc.). Superb production values also!

      On the website, there is a “Video Study” page where you talk about pre-post differences in terms of viewer knowledge of PC and willingness to recommend to a friend. In the intro, however, you cite a video study article (El-Jawahari, A., J.Clin.Onc.. 2010; 28:305). Is that about a different video from yours, or about yours? Sorry, I wasn’t quite sure from the context.

    • http://www.ability4life.com kathy kastner

      Debra, I just watched the video. Thank you. I have so much to say about it, I’m going to have to write a post. The short version: It was my first time hearing pall med specialists. Although I’m always humbled by the #hpm-ers, it’s my first time seeing and more importantly hearing what you guys are made of. I have to wonder why the &#$Patient Centered Movement doesn’t start with Pall Med as its model.

  • http://www.womeninpainawareness.ning.com carol

    A friend of mine was dying of cancer. No hope but she was in the hospital (this was years ago when hospice and palliative care was relatively new here). She was screaming in pain. When I asked a nurse why they could not give her more morphine I was told “She has to wait the 4 hours. We are not permitted to give it sooner.” I told her I have trigeminal neuralgia ( a severe facial pain disorder) and I am on the street taking up to 14 grains a day when I am in severe pain. “That is because you are not in a hospital.” she replied. They transferred my friend to a hospice, the difference night and day. Immediately she was given the kind and amount of opiate meds needed to keep her, if not always painfree, comfortable. Towards the end of her life she was asleep most of the time, but that sleep was painfree.
    Thank G-d the hospice and those wonderful nurses were there to care for her.
    As someone in chronic intractable pain, I only wish there was a way that docs were allowed the leeway that hospice personnel are, to help their patients have less pain no matter the level of meds needed.
    Carol Levy
    author A PAINED LIFE, a chronic pain journey
    http://apainedlife.blogspot.com/
    http://www.womeninpainawareness.ning.com

  • http://www.palliativecarevideo.com Debra Jarvis

    Tasha,
    Sorry for the confusion. The video study I cited was about a different video, one on patients deciding to be DNR or not. I’m so glad you enjoyed the video!