Beyond End of Life: Hospice and Palliative Care Awareness

Posted on November 8, 2017 by kerri
Most of us have an awareness of hospice or palliative care. Myself, my grandma was in a palliative care facility briefly before she passed away from cancer. i have a friend who is a minister and regularly serves families whose loved ones are receiving end of life care—she previously worked as a hospital chaplain. Another friend’s mom is a palliative care nurse. A friend has been a “palliative care” patient for years by nature of his disease, however, he lives independently in the community—as you might presume of a palliative care patient, he is not “actively dying”. Given these diverse experiences… what exactly is hospice and palliative care?
two dark skinned individuals holding hands.
Defining the terms: Hospice
Hospice and palliative care are often used interchangeably. Most often, hospice care is reserved for those within months or weeks of death, and involves family as primary caregivers for loved ones who are dying. Hospice care may occur in the home or a community hospice care centre, or less often, in hospitals that can provide round-the-clock care. [1] Hospice care focuses on relief of pain or other discomfort, most often forgoing treating the underlying disease. [1]
Hospice care allows a person to spend their final days as comfortably as possible, with loved ones and depending on the situation, familiar surroundings.
Defining the terms: Palliative Care
Palliative care is more broad than hospice care. People who receive palliative care may have a chronic illness with symptoms that cannot be alleviated, but may be able to be treated with conventional or less-conventional medicines. Palliative care can be administered at home, but most often, care is given in a hospital, care centre, or nursing home, under the supervision of a palliative care team—doctors, nurses, and other professionals. [1] There is no requirement of a terminal diagnosis to be eligible to receive palliative care, as the aim is to provide comfort, which can include cases where a person’s time of death may be unpredictable or perceived to be fairly distant—people enrolled in palliative care may not be “dying”. Unlike hospice care, patients in palliative care may continue to receive life-prolonging treatments, not just comfort care. [1] Palliative care programs at different hospitals or institutions may have different approaches and goals, so it is important to learn everything you can before choosing a palliative care provider or program. [1]
As I mentioned, I have a friend who has been receiving “palliative care” for years. In his case, palliative care allows him to have access to medicines that would not normally be prescribed for his medical condition to alleviate symptoms that cause distress and discomfort, and live more comfortably despite his chronic health problems.
Understanding your wishes
While Hospice and Palliative Care may be subjects that people are uncomfortable talking about, having discussions about end of life or chronic care are important. Learning more about hospice and palliative care can allow you to have more open discussions with your family or friends about what the options may be when there may be no more medical options. There are online communities openly discussing end of life care, including palliative or hospice care, as well as blogs that may help you to better understand how people choose the right care for themselves or a loved one. Learning more about the choices of others may help you and your loved ones make the best decisions if hospice or palliative care becomes necessary.
To learn more about end of life care, the National Caregivers Library has an amazing selection of resources available; the Canadian Virtual Hospice also has resources addressing important issues, including how to include children in a loved one’s end of life care, managing symptoms associated with dying, and maintaining activities of daily living and hygiene in the final days and weeks.
If you are receiving palliative care, it is likely a medical ID bracelet or necklace would benefit you. If you have signed a Do Not Resuscitate order, a DNR medical ID may help ensure your wishes are followed. Your state, province, or hospital/medical system may have specific protocol to follow, such as registration after consultation with your physician, to ensure your DNR status is respected. If you have decided you do not wish to be resuscitated, ensure those closest to you are aware of your wishes and know where your DNR paperwork is.

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