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What is Palliative Care?

January 3, 2010

Tomorrow, I’m starting my Palliative Care rotation. I wrote that in a letter to friends and family, and many of them asked me “uh, what is that?!” Some knew that it involves caring for the dying, and that a lot of the work involved managing end-of-life pain, but they only spoke of physical pain.

I am not an expert in palliative care, but hopefully by the end of my rotation, I will have deeper insight. In my present understanding, palliation involves treating all aspects of a person’s ‘unrest’; physical, mental, emotional, spiritual, financial, relationship, and other concerns are what we can help the terminally ill work through. Our focus is not on curing the disease. A team involving doctors, nurses, pharmacists, social workers, spiritual leaders, family, friends, counsellors, and outreach/community care aides, has the patient at its centre; together, we work to come up with a plan. There are some common aspects to these plans:

  • Worldly: getting affairs in order (i.e. making amends, assigning power of attorney etc.); filling out the Palliative Drug Benefits plan
  • Spiritual: reconnecting or gaining strength from faith, perhaps by speaking on a regular basis with a minister, rabbi, or the hospital chaplain
  • Symptoms: being free from pain or uncomfortable symptoms; bone pain, nausea, trouble breathing due to fluid on the lungs (pulmonary edema) are some pretty common issues with many terminal illnesses, like metastatic cancer; care may also involve consulting appropriate specialists to see if they can be of service (eg. would the patient benefit from a surgical debulking of their tumour [see Box 7-5]?)
  • Living Will: deciding what to do if things get worse: exploring whether the patient could benefit from an attempt at resuscitation or whether a Do Not Resuscitate (DNR) order should be signed; drawing the line for other interventions (eg. refusing a ventilator for ALS/Lou-Gerig’s disease); figuring out who will serve as a proxy decision maker should the ill patient be unable to do this herself
  • Dying: making a plan around dying – would they prefer to be cared for at home or in hospital?; exploring how much intervention would be desired (eg. if a cancer patients happens to contract an infection in hospital, should we treat the infection or not, with the possibility being that they succumb to the infection before the cancer)
  • After death: making a plan for after death – funeral arrangements, finalizing a will, etc. which is an important way of sparing the surviving family from decision-making in the most difficult of times

End-of-life planning and sorting out these issues may be a practical and necessary part of the job, however,  much of our efforts are centred around helping someone enjoy their remaining time with their loved ones, and to aid them in the process of confronting death. I have never been terminally ill, so I do not know exactly what it would be like. I cannot sympathize, but I can empathize. I can imagine how it could be difficult and frightening for some, and welcome or calming for others. I understand the manifestations of grief, how different they are from person-to-person, and can help someone to recognize that their feelings are normal. I cannot take away their feelings but maybe I can help them be more comfortable with having them. There is no pill for uncertainty or regret, but re-framing thoughts can offer a way to cope.

I can sympathize with those losing a loved one, as I have already been in those shoes. This is one time in medicine where sharing my personal experience may benefit my patients (or their families). I remember the first time I had to tell someone they were dying – she handled it better than I did! Since my preceptor made me do this on my own, I tried using some ideas from the SPIKES mnemonic to deliver the bad news. They may be a great start, but one can never go wrong “doing onto others as you would have them do unto you” in those circumstances. If they really don’t like something you are doing or saying, they’ll tell you to stop!

Let’s see in a month, after formally experiencing the field of Palliative Care, how different my ideas are about it. It feels wrong to say that I’m looking forward to it, but there is great capacity for helping people in a tangible way, and much learning for me to do.

6 Comments leave one →
  1. January 4, 2010 12:27 pm

    Great post Dr. O. You have some wonderful quotes in here. I particularly like this one: “There is no pill for uncertainty or regret, but re-framing thoughts can offer a way to cope.”

    I have used versions of this before but not so concisely worded.

    SPIKES is a good foundation, and when you get experienced in breaking bad nbews, you realize there are times to improvise and skip steps if they do not fit the moment and maybe follow up on those missed parts later or with other members of the team.

    I would caution you on sharing your personal experiences. Some families appreciate it, others don’t. It can serve as a distraction of the center of attention form the family or patient to you as the focus of support so use this tactic carefully. Looking forward to hearing about your experiences on your rotation.

    • January 9, 2010 1:08 am

      thanks for the advice!
      I find myself doing more ‘normalizing’ than relating personal experiences. It seems to do the same job (reassurance) but in a different way.

  2. January 4, 2010 10:22 pm

    You know, just to find yourself feeling comfortable in an area of patient care that sends most physicians screaming from the room in search of coffee and a nice, juicy abscess to drain or VTE to anticoagulate is a big deal. Who is comfortable talking about dying? You’ll be next to a patient who is clearly an hour from death and families will be exorting: “Oh, Ma, we’re going to go to the shooting range and buffet when you’re better….” (That’s mean….But true!) Symptoms management is a set of learned skills. Being comfortably competent around death and having easy, understandable language to use while patients and families (nowhere in medicine are the families your patients too as much as they are in palliative care) do the intense work of dying/grieving is a gift. People will remember you, what you looked like, what you were wearing, and what you said while their moms, husbands, sisters, God forbid children die.

    That enough pressure for ya? Happy New Year.

    • January 9, 2010 1:15 am

      we don’t have “shooting ranges” and “buffets” in Canada.
      haha (we do… just not like in the US!)

      The families are incredible – each so different. I’m the kind of person who likes to have a giggle and crack a smile wherever possible and I’m amazed that I’m still able to do that (appropriately!) on this service. We celebrate the good times and do our best to manage the rough times.

      Families thank me profoundly when I feel that I’ve done so little for them. I struggle with seeing patients delirious or nauseated as the result of our trying to control the pain. In the end, there is always balance, and the way people die under our care is the way I’d want to go.

      There have been some beautiful moments – especially on house calls – when strength and love are at the forefront, and disease is the last thing evident.

  3. January 12, 2010 8:29 pm

    Oh my goodness, you’re going to be touring cemeteries soon for fun.

    Hang in there, baby. Some day when you are–God forbid–on the family receiving end of hospice, you’ll see how seemingly innocuous, even dumb kinda stuff-hugs, holding a hang, just being there in all its mundane glory, can mean the world in the right place at the right time.

    Not just in hospice! Being sick is scary. Why yesterday your patient was in Toronto and today woke up on Planet Medicine, in Cancerland, or CT-World, or horror, Operating Room Go-Round. Your immediate goal many times in Primary Care will be as tour guide in your home away from home.

    All that school just to be Julie from The Love Boat! (I just dated myself.)

    • January 12, 2010 10:08 pm

      yeah… the Love Boat is kind of, well, before my time – but I’ve got a funny story about that (I’ve done the same thing!) that I’ll soon post!

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