Friday, November 23, 2012

Does Anyone Have The Map? Navigating the Journey to the End-of-Life

I attended a workshop organised by our Southeast LHIN's CCAC. What is important for staff, residents and family members to understand is the trajectory of a disease. Many chronic diseases, are predictable in their manifestations. 
The purpose of the workshop was in explaining the
Palliative Pain & Symptom Management Consultation Service
The keynote speaker was Donna Blair, Nurse Practitioner.

NP Role in SE LHIN

The SE LHIN has been assigned funding to support a NP role through SE LHIN's CCAC. NPs were hired in  April and May. They laid the groundwork through meetings with administration and Directors of Care (DOC) staff, medical advisors, physicians and residents of long-term care (LTC) and Family Council (FC) meetings. (Each LTC is required to have a FC, much like Parent Councils in schools.)

Donna Blair outlined the Goals of NP in LTC
·      Avoid Emergency Department transfers and readmissions
·      Avoid Urinary Tract infections and Respiratory Infections
·      To establish provision of care of residents for acute and episodic health problems
·      Work with the LTC team to enhance the level of care provided in the home
·      Perform comprehensive, focused health assessments
·      Diagnose illness, injuries
·      Prescribe medications, treatments, tests – except controlled drugs
·      Manage chronic diseases
·      Collaborate with LTC team


·      If transfer to ED necessary, communication with ED nurse & physician
·      Treatment for acute health problems initiates in LTC, IV
·      Referral to other health care resources
·      To have access to a NP within an hour at bedside
·      Wound closures, monitoring unstable client


To prevent complications, keep residents comfortable, and monitor resident for changes in functioning.

Fevers, chills, edema, wound, skin, eye infections, abdominal distension, diarrhea, constipation, behavior changes, new and increased pain, falls, injuries.
The LTC has the requirement to call physicians for many issues. The NP would be called if the physicians is unable to attend to the resident. 

When to call the NP – some physicians say to call NP first. 
There are 30 LTC homes in the SE LHIN without NP, 6 have NP.
There are 9 LTC homes onboard, calling their NPs regularly, from Napanee to Maplewood, Brighton, Picton, Belleville.
Who can speak to the NP?
The DOC, the nurses in LTC. Family members can request that the NP be called in for a consult. We all know that depending upon the individual nurse, there may be different responses to questions from a family member. These NPs are the experts in end-of-life care and should be treated as such.

This program went live in July and have decreased ER visits, based on collected data.

The Importance of Understanding Disease Trajectories: Nurse Practitioner (NP) in Long-Term Care

Chronic Illness Trajectory

Individuals who preset in LTC with chronic disease over their lifetimes have different stages and progression, depending upon the disease. 
Chronic Disease affects mental, social and physical well-being, e.g., COPD, cancer, heart and stroke issues.

Nursing protocols for residents include the identification phase, presenting problems, treatment goals; establish plans to meet goals, identification of factors that help or hinder goals.

The trajectory of a disease can be a gradual decline, or a series of declines, or a sudden decline in biopsychosocial symptoms. This means that a person with cancer will have a predictable decline in their physical (biological: mobility, food intake, awareness of their surroundings, ability to communicate, or to think abstract thoughts), psychological (mental acuity) and other behaviours. What often happens at end-of-life is that residents are unable to state their needs, whether it is to avoid food, limit liquids, refuse to be hauled out of bed three times a day, and to be left alone. Many at end of life prefer to be solitary, and quiet. Often soft music is an option. Peace and quiet, often missing in the noisy hallway of a LTC, is important for the resident.

These biopsychosocial symptoms and (dis)abilities are best assessed on an ongoing basis, using any of the assessment tools freely available to the healthcare providers. Unfortunately, these are apparently secret documents (see my post on Pain Assessment), and nurses tend to guard this information from family members, those who most want to understand the trajectory. Pain must be controlled, and in this day and age many myths still abound. Yes, some family members do not want to know, but how many people ask a doctor or nurse, 'How long do they have left?" This is best determined by assessing the trajectory of the disease.
This is my father in pain. The signs are clear,
even if a resident cannot verbally declare they are in pain.
I argued with nurses, wrestled with his physician,
 to get him pain meds.

There are assessment tools available, for pain assessment, but the most important assessment tool for family members is the PPS. It is not a secret document, nor is it difficult to understand. When I told a nurse I offered it to client's family members, they were horrified. In my experience, it helps families understand that the trajectory is normal, and there will be no cures. This does not change the diagnosis, nor does it shorten life. It is evidence of a loved one's abilities. Simply that. It gives us information and an understanding of what we might expect, although each person is different, the body does begin to slow down and our needs for food and water change as death approaches. It is expected and family members need to begin to pregrieve, and prepare for the end-of-life.

Palliative Performance Scale (PPSv2) - Palliative Care

Some decline rapidly, others slowly, with recovery in between. Others decline in a stair-like deterioration. All are normal.

The 8 stages of chronic illness trajectory

1.     Initial presentation of situation; occurs before any signs and symptoms of a disease
2.     Trajectory onset
3.     Crisis: potentially life-threatening situation
4.     Acute: post crisis-symptoms controlled
5.     Stable, symptoms are controlled
6.     Unstable: e.g. foot ulcer,
7.     Downward phase; progressive deterioration; mental & physical
8.     Dying phase, weeks, days or hours preceding death.

The program does not apply to retirement homes in Ontario. 
With about 500/600 LTC being for-profits in Ontario, this is an excellent program.
Retirement homes could hire a NP to work with them. In Kingston: two homes have privately funded NPs to work with them. This would be ideal.

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