Palliative Care, Smiling Billy and the Death Moth

I have been on placement with a Palliative Care unit for my elective rotation for the last 8 weeks.  It has been a great experience with an enthusiastic team of people.  Most people think it must be a very sad place to work. It's not. We make such a positive difference that I can't be discouraged with it. I also really like the extremely relational nature of the work that factors into the medical problem solving. It is lastly a very good way to observe the end stages of various pathologies.

I agree what Marijke Durning, RN has written about the discipline, and so I'll share it here:

Top 10 Myths of Palliative Care

1. If I accept to receive palliative care, my doctors have given up on me.

Palliative care doesn’t mean that doctors have given up on a patient. When palliative care is proposed, it means that the healthcare team has realized that the disease is not curable and that death can’t be avoided. By offering palliative care, you are being offered the chance to live out your remaining days as comfortably as they can be, under experts in end-of-life care.

2. Palliative care means no more treatment.

When a palliative care team takes over the care of a patient, treatment doesn’t stop. Treatment and therapies can continue, but they have a different goal. For example, if you have cancer, you still may be offered radiotherapy. However, the radiotherapy isn’t to cure the cancer but to help shrink the tumor that is causing pain or discomfort.

3. Palliative care is for people with cancer.

Palliative care is offered to anyone who is dying of a chronic or terminal illness. While many people who receive palliative care are dying from cancer, some have AIDS, heart disease, renal failure, multiple sclerosis, muscular dystrophy, and many other fatal illnesses.

4. Palliative care is for old people.

Many children are diagnosed with terminal illnesses. They may be born with a birth defect, such as a heart defect, or a disease that will cause them to die as a child or they may develop a terminal illness later on in their childhood. Palliative care is an important part of their medical care as they reach the end-of-life.

5. Palliative care means I’m very close to death.

When someone is transferred to the palliative care team, they may die within days or weeks, or they may live for considerably longer. Palliative care isn’t offered according to the amount of time you have left, but according to how much you need the services of a palliative care team approach.

6. In palliative care, they dope you up with narcotics or opioids until you die.

Pain is a big issue in palliative care. With some diseases, there is often a high level of pain, but in other diseases, there isn’t. If your disease does cause severe pain, you may be treated with narcotics or opioids, but only if you need it and only at the dosages you need it. The goal of palliative care isn’t to dope you up, but to make you as comfortable as possible during the end-of-life period. (Barb: This is an enduring myth, even among other health professionals. I have seen many patients who have actually had their opiods REDUCED while admitted under the Pall Care team. Morphine is not the only trick we have - there are other pain control medications and strategies used. )

7. If I get morphine, I will stop breathing.

Morphine does slow down respirations in many people. But proper doses of morphine usually doesn’t cause someone to stop breathing.

8. I can only get palliative care if I’m in the hospital.

Palliative care services are offered in many communities. Care at end-of-life can be given in a hospital, stand-alone residence, or at home, depending on the resources available.

9. My family can’t help if I’m in palliative care.

One of the benefits of palliative care is that it’s not only for the dying person. The palliative care team cares for the dying patient and his or her family and friends. The care at the end-of-life isn’t just about physical comfort, but it’s about emotional, psychological and spiritual support for everyone who loves and is part of the life of the dying patient. (Barb: We even allow pets to come and visit their owners!)

10. I will have no control if I agree to palliative care.

Palliative care is a specialty in medicine, just as is cardiology, pediatrics, and obstetrics. None of the specialties take over, they specialize in helping the patients under their care. If you are a patient in palliative care, you are consulted and are part of the team for as long as you are able to be. (Barb: once a patient is no longer cognitively able to accept or reject  treatments, the decisions usually are discussed with the patient's appointed Power of Attorney- usually a family member. Decisions are not made behind closed doors without discussion.)

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There is also a little bit of intrigue to keep the job interesting. Apparently there are rooms on the unit that are known to be "haunted".  Numerous patients with no relation to each other and separated by time have described the same visitor to specific rooms. Their stories match right down to ethnicity, type of jewellery worn, or where the visitor sits in the room.  Fortunately, none of these encounters have been scary or malevolent. Usually it appears as a visitor, stays for a while, then leaves:
One room is visited  by a bloke called  Billy.  He is an indigenous man (apparently the first occupant to die in the room). He sits in the corner chair and smiles pleasantly.
Another room is shared with a tall man who wears a bracelet and walks from one side of the room to the other. 
A third room is visited by a mother holding a baby.
As a Christian, I am not 100% sure about what I think of ghost stories.  They are actually not that uncommon in hospital settings.  There is a link to explore HERE  .
    Lastly, there seems to be a pretty moth that has taken up residence in the unit.  He seems to show up in different rooms. The nurse manager has nicknamed him the "Death Moth".  It is true he has appeared in a few rooms where that patient subsequently died. However, being a Palliative Care unit,  approximately 75% of admissions will end their life here.  So not ready to chalk that up as paranormal yet. Although there is a cat who seems to have this ability! Links about Oscar the Cat HERE and HERE. He's even had his story published in the New England Journal of Medicine: HERE.