Tuesday, May 24, 2011

When a patient is declared palliative - what do you need to know?

Depression, as well as pain, is a common complaint
Dad simply could not express pain issues
due to cognitive complications of his brain tumour
This is a huge decision between the patient, the doctor and the family. It is also the reason why we all should have Advanced Care Planning. For those who research their disease, they will be able to understand the progression, if they are able to get an honest diagnosis, treatment plan, and palliative care plan. It can save family members undue emotional pain, as they juggle the needs of the patient, and can better understand their care.

Why determine palliative diagnosis?
  • Name it and understand it.
  • Healthcare access, considerations and support
  • Change from quantity of life to quality of life
  • Switch from aggressive treatment to comfort measures
  • Allow family to make arrangements (e.g., I quit work to provide care)

This is an important situation. In my late mother's case, the doctor visited her at home, told me she was palliative, the day before she died. I did not understand how much time she had, however.
I took off to Toronto to give some IT workshops, while she lay dying. I didn't know how ill she was. I left my brother in charge. She sent me away, and did not understand this information.
For this reason, I believe family needs to understand.

For U.S. patients they qualify for certain medical support, in Canada, with universal healthcare, not so much. But it should change our attitude towards a patient's care, and how we treat them.

The signs are there for those who are given this information. It is not complex, and I believe all patients and caregivers should have access to it. Victoria Hospice in B.C. has one of the best organizations, but other hospices exist in Canada.

Who determines a palliative diagnosis?
The physician, the patient and the family. Once a patient is palliative, Ontario's Pain Management Nurses can assist with symptom management, and do pain assessment. Call your CCAC for the nurse near you.

How do we assess palliative patients?
One of the best I've found, easy for a layperson like myself, caregivers, and medical staff:


If you look at the Palliative Performance Scale (PPS), you can determine how quickly or slowly a patient is deteriorating. The patient will be at 100% in the beginning, and may gradually or quickly deteriorate. One client of mine went from 30% to 20% over a weekend, and I called the family to let them know. You want to be able to say goodbye, as I did not have that chance with my parents. Mom was at 30% two days before she died (Saturday), 20% Friday, to 10% the next day. I had no idea of the stages. On the Friday, I helped her change her adult incontinence product. This was humbling. She'd worn them for years, due to colitis, but now couldn't make it to the toilet at all.

The other reason for a diagnosis, is ER trips can be avoided as both patient and caregiver can manage at home. My brother had to leave my ill father at home, while accompanying mom to the ER.
    The PPS provides a common understanding, in an evidence-based approach to care. There are 5 criteria upon which the patient is assessed.

    1. Ambulation - Full, reduced, mainly sitting, lying in bed.
    2. Activity and evidence of disease - Normal activity, unable to do housework, hobbies, significant or extensive disease.
    3. Self-care - Fully independent, occasional assistance, incontinent, total care.
    4. Intake - Normal, reduced, minimal, sips, mouth care only.
    5. Consciousness level - Fully conscious, confusion, drowsy, coma/confusion.
    What changes with a palliative diagnosis?
    Understanding where the patient fits on the PPS allows caregivers; family, friends, professionals, to be able to provide the best care. For example, getting a patient up and out of bed may or may not be indicated. My late father tired so easily, and would fall asleep in his wheelchair, falling our of it, and we had to use restraints to keep him vertical. 

    With a palliative diagnosis, a family member in Canada can qualify for a Compassionate Care Benefit (CCB), as long as the doctor is willing to make this diagnosis. Also, there are financial reasons in terms of an estate, to claim disability on a tax return. Unfortunately, doctors are not always willing to predict death within 26 weeks, a requirement of the CCB. This is a gross error on the part of government. This is the financial impact to the (mostly) women who care for palliative family members.

    Staff who did not understand his diagnosis, and myself, would feel the need to make sure my Dad ate his veggies and meat, when all he wanted was his dessert. Also, why on earth didn't I let him have his much-loved glass of sherry before dinner? The pills he took to prevent his seizures contraindicated this, but the man was now dying. I should have made him happy.
    I look back now, and realize how silly it was for the dietician to worry about his cholesterol level, when he wanted an egg every day for breakfast. 
    Medications change with a palliative determination. Cholesterol wasn't going to kill him. He was taking 8 pills a day, and this, too, was difficult. Nearer the end he couldn't swallow his pills, and we would try to hide them in applesauce. It was frustrating for all of us.

    Treatment and symptom management protocols
    Those who work in end-of-life care understand these protocols: mouth care, prevention of bed sores (e.g., turn the client every two hours, as required), the pain that comes with being in bed all day, how to change linens with the patient in the bed, keeping the patient clean, preventing aspiration pneumonia (breathing in bacteria; causing pneumonia), dental hygiene, regular attention to the body as it fights the disease.

    Food and liquids
    This blue veining is a sign of liver damage
    It is important to listen to the patient, and food and liquid intake changes, it can be normal, or reduced. At some point my parents were simply taking a tablespoon or two at a time, several times a day. This is 'normal' in palliative care. Eventually, they couldn't tolerate any solid food. In end-of-life care, the patient cannot necessarily digest food, but you can prevent dehydration. We gave my family a liquid supplement, to keep them hydrated, dad drank lots of tea, too. But in the stage near death, the only thing you can do is to give them mouth care: moistening dry lips with ice, or a lip balm.  

    Pain Management
    If there is pain, you must manage it. If the patient had pain before becoming ill, e.g., my father's arthritis in his knees was very painful, and it got to a point where he could not articulate it. There are signs of pain, and caregivers must be able to identify these, in conjunction with the physician, or nurse. 
    As a patient deteriorates, family should have a Pain Management Kit on hand. Easily administered morphine in a patch, or pills. Medications for when the patient has pain, which can be administered in the home, without the need for an ER visit. 

    One of my clients was clearly in pain, tearing at her clothes, moaning, grimacing, yet her (new) nurse didn't believe she was having pain. For the family, I printed out an article, 'signs of pain', and they were better able to advocate for their mother. I understand, due to litigation, why professionals are afraid of overmedicating, but we know so much more, now, about pain management.

    Pain needs to be properly diagnosed, have ongoing assessment, and the healthcare professionals should be doing pain history, physical examination, social and psychosocial factors, and have an understanding of the severity and intensity of the pain.

    RESOURCES

    Pain assessment and management  in LTC

    Pain Gap Analysis Worksheet. Pain Management Guideline (PMG) Kit. The PMG Kit for Aged Care is designed to be used in conjunction with the Australian PMG


    The PMG Kit for Aged Care



    PMG Kit | 9. Explanation of The Pain. Management Guidelines . Interventional pain management techniques such as local anaesthetic blocks

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