Hospice Care – A Paradigm Shift

Traditional Model to End-of-life Care

When the term hospice care is declared, you may reactively feel a sinking and hopeless feeling.  What was once a formidable disease to treat now abruptly shifted to an act of surrendering.  Whether you are the patient or a family member, the term hospice is never welcoming because it has a hopeless connotation associated with it.  And you would be right in the defense of this stigma, if you are living in the 1950’s.

Healthcare has evolved tremendously and so has the practice and utility of hospice care.  Unfortunately, the negative stigma of hospice care is finely engrained in our perception and understanding.  Consequently, the proper provision of hospice care is unavailable and untimely to help navigate patients and their family members during this challenging ordeal.

Upon diagnosis of a terminally ill condition or end-of-life care in the traditional healthcare model, a reactive approach is adopted but this often creates unnecessary stress and burden for both the patient and family members.  During this critical period, family members are immediately summoned in a confused and emotional state.  The various healthcare channels and medical lingos are presented like a convoluted maze and somehow patients and their family members are expected to find their path.  In this maze, a reactive approach is adopted where patients and their family members feel they have little control and understanding of the situation, lost in the system, and their paths are ultimately dictated by the environment.  There is no foresight of the overall direction and goals of the patient.  Healthcare becomes navigating through this endless maze, hardly the “care” you come to expect that is supposed to put the patient first.

Gap in the Healthcare System

Let’s step back a little to understand how end-of-life care became a complex maze.  Let’s step all the way back in time to childbirth.  Childbirth is a glorious celebration.  Before the actual event, there are celebrations and congratulations from family, friends, and colleagues.  The parents are bathed in countless baby showers and blessed with gifts and advice.  A healthy suspense fills the room when the parents discover whether they will be blessed with a boy or girl.  There is a whimsical attitude whenever a conversation is discussed about the baby.  This is all happening before the actual childbirth!

Now contrast childbirth with end-of-life – you can’t!  There is no comparison between these two events because they are on extreme poles of the spectrum.  There is hardly any celebration during the critical and sensitive end-of-life period.  Rather there are high levels of stress, guilt, depression, and most importantly, fear of the unknown or lack of control over the situation.

How we can then we shift our attitudes so that the way we come into this world is mirrored to the way we exit this world?

A Paradigm Shift

At the root of the confusion, anxiety, fear, and guilt to end-of-life care is the setup of the healthcare system.  The healthcare system is setup as a reactive model where symptoms are treated only upon presentation.  The projectile of a chronic disease however (e.g. cancer, kidney disease, or dementia) is not always considered in the treatment plan; the reactivity nature is engrained in the healthcare system where treatments are implemented when there is a sudden deterioration in health.  As a result, when the disease progresses to a terminal stage where treatment is futile, hospice care is summoned.  This reactive approach is graphically illustrated in the following diagram:

A paradigm shift is required to revolutionize and uplift these traditional roots.  Instead of a reactive model, a proactive model should be employed to provide the highest level of care for patients and their families.

The Evidence to an Early Proactive Hospice Care Model

There is solid scientific evidence to support the utility of early hospice care.  Temel and colleagues (3) from the Massachusetts General Hospital, Boston in 2010 conducted a study in metastatic non-small-cell lung cancer comparing standard care and introducing early palliative care.  151 patients were enrolled in the study and randomized to one of the two groups.  The results were striking and the following benefits were observed among subjects assigned to the early proactive palliative care group:

• Higher quality of life
• Less aggressive treatments required during the end-of-life care
• Lower rates of depression
• Survival benefit of 2.7 months longer

Live Well During End-of-life  

Hospice care puts the meaning of “care” back in healthcare during the end-of-life period.  Early utilization of this valuable service has been proven scientifically to have many benefits for both patients and family members.  Hospice care practices a proactive approach and provides the following valuable healthcare services for patients and family members:

• Medical assessment and treatment of symptoms from a specialist
• Identify the patient and their family members’ goals and integrate these principles early in the care plan and decision-making
• Proper mobilization of healthcare resources to ensure continuity of care
• Navigating patients through the various care settings (e.g. hospital, nursing home, patient’s home, or hospice care)

Subsequent blogs will focus more on various end-of-life care and how hospice care can help you and your family in this journey to live well during the end-of-life period.

References:

(1) FollwellM,  BurmanD,  LeLW,  et al. Phase II study of an outpatient palliative

care intervention in patients with meta-static cancer. J Clin Oncol. 2009;27:206-13.

(2) Jordhøy MS, Fayers P, Loge JH, Ahlner-ElmqvistM,  KaasaS. Quality of life in

palliative cancer care: results from a cluster randomized trial. J Clin Oncol. 2001;

19:3884-94.

(3) Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363:733-42

Written by: Calvin Poon, RPh, BScPhm, ACPR, CDE