{"id":513,"date":"2023-08-11T09:53:52","date_gmt":"2023-08-11T13:53:52","guid":{"rendered":"http:\/\/www.stmaryspalliativecare.ca\/patients-and-families\/advance-care-planning-copy\/"},"modified":"2024-08-23T09:58:35","modified_gmt":"2024-08-23T13:58:35","slug":"the-patient-experience","status":"publish","type":"page","link":"http:\/\/www.stmaryspalliativecare.ca\/en\/patients-and-families\/the-patient-experience\/","title":{"rendered":"The patient experience"},"content":{"rendered":"\n
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Serious illness brings to the surface many emotions in ourselves and our loved ones. It forces us to adapt in ways that we had not anticipated. A serious illness, by definition, is one that changes our life path. It is an illness that may be treatable to gain more time, but it is not curable\u2014it is an illness that shortens the time that is left.<\/p>\n\n\n\n

Understanding the role of palliative care in the patient experience<\/h2>\n\n\n
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Palliative care is often associated with dying and treatments that are given at the very end of life. This is, in fact, not the central purpose of palliative care. To better understand, we can look at the origin of the word palliative that comes from the Latin word pallium<\/em> meaning \u201cto cloak\u201d. In other words, to palliate is to cloak, to cover up, the symptoms of an illness without curing it. Palliative care helps patients focus their energy on what matters most to them. Helping with symptom management can and should be offered early\u2014not just at the end.<\/p>\n\n\n\n

The mention of palliative care can cause fear and dread. These negative feelings come from the common scenario when patients are referred late in their illness when the treatment meant to prolong life is no longer working. Physicians will often wait on referring patients to palliative care in order to avoid patient distress when in fact early palliative care interventions are proven to improve quality of life and can sometimes prolong life. A palliative care referral will not worsen a patient\u2019s condition and will not hasten death.<\/p>\n\n\n

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Another way to illustrate the role of palliative care is to think of palliative care as the umbrella and not the rain<\/strong>. If you had planned for an enjoyable outdoor walk or picnic on the weekend, then you may be quite disappointed to find out that rain is in the forecast. One way to still enjoy some of the outdoor activities could be to use an umbrella. \u201cThe umbrella works best if we provide it to patients before the rain begins\u2014do not wait until the patient gets drenched!\u201d*<\/p>\n\n\n\n

In palliative care, we are here to provide help and support along this journey that can, at times, seem like a roller coaster. We are here to meet individuals anywhere along the course of their illness, whether their focus is to pursue treatments aimed at prolonging life or aimed at optimizing comfort\u2014or somewhere in between. We want to empower patients to let us know their goals, wishes, or fears. We want to ensure that patients understand the bigger picture, and we want to help them prepare for the road ahead. Whenever possible, we try to relieve suffering.<\/p>\n\n\n\n

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\u201cTo cure sometimes, to relieve often, to comfort always.\u201d<\/p>\n\u2013 Dr. Edward Livingston Trudeau<\/cite><\/blockquote>\n\n\n\n

Understanding prognosis and the bigger picture<\/h2>\n\n\n\n

In the context of a serious illness, prognosis refers to an estimate of the amount of time that is left to live. While we do not have a crystal ball that tells us when one\u2019s time will come, healthcare professionals can use different tools to help give a rough estimate. Certainly, this scientific process is by no means exact. We encourage having a discussion around prognosis to help patients prioritize and plan for what\u2019s to come. If a person is not interested in knowing, this is perfectly fine.<\/p>\n\n\n\n

How do we estimate prognosis?<\/h3>\n\n\n\n

We can generally estimate prognosis by understanding the general categories of serious illnesses and their progression. Inevitably, all serious illnesses cause a loss of autonomy over time. We break this down into three groups of illnesses: 1) advanced cancers, 2) end-stage organ failure, and 3) dementias, frailty, or neurodegenerative conditions. Of course, these are generalizations, and a healthcare professional can explain if a particular situation differs from what is presented here.<\/p>\n\n\n\n

A rule of thumb that is used to predict prognosis is the speed of the loss of autonomy. When changes occur over months, then we tend to think that there are months left to live. When changes occur over weeks, then we tend to think that there are weeks left to live. The same would be true if changes occur over days. Click below to open each illness trajectory (illness course or progression) to learn more details.<\/p>\n\n\n

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\r\n Learn more about the cancer trajectory<\/a>\r\n

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Patients with a new diagnosis of advanced cancer will usually have a prognosis ranging from months to years where their autonomy, or level of function, remains relatively preserved and declines slowly. Eventually, as the illness progresses, there is a point where the speed of the decline increases. This indicates that there is a shorter amount of time left, likely a few months to a few weeks.<\/p>\n

Chart adapted from Pallium Canada. Illness trajectories.
\nhttps:\/\/pallium.ca\/resourceapp\/#illness-trajectories<\/a>.<\/p>\n<\/div>\r\n <\/div>\r\n

\r\n Learn more about the end-stage organ failure trajectory<\/a>\r\n

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When patients are first diagnosed with an end-stage organ failure, like congestive heart failure, chronic obstructive pulmonary disease, or kidney failure, they usually have many years ahead of them. Their trajectory is marked by a stepwise decline where they have periods of relative stability or slow decline with episodes of acute crises. These episodes frequently require hospital care and patients lose more autonomy with every crisis. With time, the crises become more frequent, usually with shorter breaks in between the episodes, until the final crisis that leads to the patient\u2019s death. Prognostication is more difficult to predict in this trajectory as we have a hard time knowing when this last crisis will be.<\/p>\n

Chart adapted from Pallium Canada. Illness trajectories.
\nhttps:\/\/pallium.ca\/resourceapp\/#illness-trajectories<\/a>.<\/p>\n<\/div>\r\n <\/div>\r\n

\r\n Learn more about the dementia, frailty, and neurodegenerative trajectory<\/a>\r\n

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Patients in this trajectory have illnesses that are marked by a loss of autonomy usually at the time of diagnosis. These illnesses follow a slow decline over many years and often require care aimed at compensating their loss of autonomy early on. This is often the trajectory of the hardest prognosis to predict since the loss of autonomy is a less reliable indicator of the amount time left.<\/p>\n

Chart adapted from Pallium Canada. Illness trajectories.
\nhttps:\/\/pallium.ca\/resourceapp\/#illness-trajectories<\/a>.<\/p>\n<\/div>\r\n <\/div>\r\n <\/div>\r\n\n\n\n

<\/div>\n<\/div><\/div>\n\n\n\n
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* Zimmermann C, Mathews J. Palliative Care Is the Umbrella, Not the Rain–A Metaphor to Guide Conversations in Advanced Cancer. JAMA Oncology 2022;8(5):681-2.<\/em><\/p>\n\n\n\n

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Resources relating to the patient experience<\/h2>\n\n\n\n

The very popular podcast The Waiting Room Revolution<\/a> aims to empower patients facing a serious illness and their loved ones. The podcast is produced by Dr. Hsien Seow, a palliative care researcher, and Dr. Samantha Winemaker, a palliative care physician. They are both based out of McMaster University in Ontario. One of their foundational messages is, \u201cHope for the best, prepare for the rest.\u201d<\/p>\n\n\n\n

Hearing the testimonies and voices of patients with a serious illness can help humanize the experience and make us feel that we are not alone. Check out Health Experiences<\/a>, a patient-driven resource developed by Dr. Susan Law and fellow researchers sponsored in part by the St. Mary\u2019s Foundation. This website continues to expand.<\/p>\n\n\n\n

For Montreal-based peer support for patients living with cancer, check out the well-known community organization Hope & Cope<\/a>. They are affiliated with the Jewish General Hospital\u2019s Segal Centre, but they provide services to anyone living with or affected by cancer who is looking for services in Montreal.<\/p>\n\n\n\n

The Canadian Virtual Hospice<\/a> provides information on what can be expected in the final months, weeks, and days of life.<\/p>\n<\/div><\/div>\n<\/div><\/div>\n","protected":false},"excerpt":{"rendered":"

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