The Health Herald, an online publication for nursing assistants, made a list of the top 50 hospice blogs on the internet.  The page is a great resource for anyone looking for a list of hospice related blogs.  I'm happy to say my Palliative Care Blog made the list, as did many other blogs I frequent.

Be sure to check out the list when you have some free time and check out some of the blogs listed.

Top 50 Hospice Blogs

In a story in the New York Times published January 25th, a daughter tells of her experience being asked to make a life and death decision for her father in the emergency room.  Her father had been very ill for a long time.  His kidneys, liver, and heart were failing and his lungs were full of fluid.  The ER doctor asked about a living will and durable power of attorney (DPOA) status.  When it was established that she was the DPOA, she was asked to make a decision that thousands are asked to make each year; whether to implement heroic measures or allow the dying process to proceed naturally.  Her first instinct was to allow her father to die peacefully, avoiding the recurrent ER visits and the traumatic intubation that was required to help him live.  She took a chance and asked her father, who was minimally responsive, what he wanted and he made it clear that he wanted to be intubated and have everything done possible to save his life.

Her father never made it off the respirator and died several months later.  This is the kind of death so many people are trying to avoid.  Most people want to die a peaceful death at home but families and physicians often get in the way, making decisions to prolong the patients death, perhaps to save themselves later guilt.  This story shows just the opposite - a patient who wants everything done even when the physician and family are ready to let go.

This story is a great example of why it is so important to have discussions with loved ones ahead of time and make your end-of-life wishes known.  Anytime the decision is left to family members and physicians, the risk is taken to make the opposite decision of what the patient actually wants.  A living will alone is not enough.  Clear discussions about what you would want done for you if you were unable to make the decision yourself is the only way to ensure that your loved ones really know what you want.  This discussion can save you from unwanted and traumatic medical interventions (or ensure that you get them, if that's your wish) and can save your loved ones from a lifetime of guilt and regret if their left unsure whether they made the right decision.

Plan Ahead with Advance Directives

Hands Off!  Do Not Resuscitate Orders

I visited with a new hospice patient and her daughter last week. The patient was nearing death and was aware enough to know that her time was short. We had a wonderful conversation and they were very open to talking about everything that they may expect as she journeyed toward death. One of the daughters main concerns was what to do if her mother developed the "death rattle". She had been told by a co-worker that it was a horrible symptom to be dreaded and she wanted to be sure that we could treat it if it occurred. I reassured her that we could absolutely treat it if it developed but I also reassured her that the death rattle wasn't something to be dreaded.

Interestingly, I visited with another family over the weekend and we were discussing the hospice comfort kit. The kit our hospice sends out to patients includes a medication to dry up the excess secretions in the airway that cause the death rattle. As I was explaining this medication, the patient's daughter interrupted me and said, "But that's not really an uncomfortable symptom is it? I imagine it's probably worse for the people who have to listen to it than it is for the person experiencing it." How very astute! I affirmed her assumption, explaining that the death rattle doesn't likely cause serious discomfort. She then refused the medication saying, "If it's a natural part of death, I'd just assume let it happen and not fight it."

Two very different feelings about an often misunderstood symptom. Neither one is right or wrong. Whether the death rattle is a cause for concern and how aggressively to treat it, if at all, will vary from family to family. The role of hospice is to support the family in whatever is most important to them.

So, what causes the death rattle and how is it treated? Here is some information to help you understand one part of the natural process of dying.

The Death Rattle

The Dying Process

Acts of Love: Caring for a Dying Loved One

A recent survey done by Dr. Sara N. Davidson of the University of Alberta revealed that nearly half of patients with chronic kidney disease want to discuss advance healthcare planning with their physician but only ten percent discussed it with their nephrologist and only 10 percent had done so with their family doctor. Most patients surveyed reported that they weren't aware of the palliative care option and didn't know what to expect in the final weeks of their life. Come on doctors, you've got to do better here. I don't have much more to say about these discouraging numbers than what I said in my last blog post. Be sure to read how I feel about mandatory disclosure of patient's options and take the poll.