What are your goals of care?
Published 7:30 am Saturday, August 5, 2023
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Many times, when I am asked to speak to a patient or family member about hospice, one of my first questions to them is, “What are your goals of care?”
When looking at measures of treatment, one needs to identify those goals to help them to determine which route they wish to take. Aggressive medical treatment will continue to use all measures to get better or cure the illness one is facing. This may include multiple medications, several trips to the doctor or specialist every month, and going in and out of the hospital for treatment. Another option is palliative care. Palliative is specialized medical care for people living with a serious illness. Patients in palliative care may receive medical care for their symptoms, while many times continuing some of the medical treatments intended to cure their serious illness. Sometimes this may cause more symptoms or, at times, are not aligned with a person’s individual goals for their lives. Hospice care provides an alternative to treatments that are primarily focused on life-prolonging measures when a disease has reached an advanced stage and curative measures have not resulted in the expected or hoped-for outcome. Though often used interchangeably, hospice and palliative care are not the same. Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment because the side effects outweigh the benefits. Palliative care is comfort care with or without curative intent. Some hospice agencies offer both courses of care, but it is hospice that’s primary focus is on pain and symptom management, while also attending to the patient’s and family’s emotional and spiritual needs as the end-of-life approaches.
Interestingly, the word hospice comes from the Latin word “hospis,” meaning host and guest. It is the root of words such as hospitality, hospital, hotel, hostel, and hospice in English. While the origins of hospice are somewhat unclear, some speculation is that “safe houses” in Biblical times where travelers could find safety, rest, and refuge from bandits is the earliest evidence of what has grown into the modern hospice concept. In the 1950s Cicely Saunders developed many of the foundational principles of our modern day hospice care
I know that the end-of-life journey is difficult and exhausting, as I have witnessed it with family, friends, and, of course, professionally, but it can also be a time of tranquility and peace. I have seen first-hand the difference hospice can make in one’s life. I have witnessed estranged family members receive forgiveness and old wounds healed. I have been humbled and honored to listen to memories of life well lived mixed with laughter and tears. I’ve been a part of making that sought-after trip a reality for patients and families. I’ve been a part of families who have rejoiced when their loved one was able to get pain or symptom medication, and not have to only get half a prescription filled because of the cost, or not be able to have it filled at all. When a hospice patient has utilized the respite benefit, I’ve seen caregivers take much-needed time to rest or have the time to attend to their own personal or medical needs. I know the difference that hospice care can make at the end-of-life, and it is overwhelmingly special.
In conclusion to today’s column, I want to leave with this. I know that hearing the word hospice is terrifying. I acknowledge that accepting you or your loved one might need hospice is certainly not easy. Most often, accepting hospice is a heart-wrenching experience because it means accepting that unless there is a miracle on this side of Heaven, life as we know it is going to change. However, I believe, according to the bible, in Hebrews 9:27, “And as it is appointed unto men once to die, but after this the judgment.” Therefore, as life’s only certainty, death is never more than one heartbeat away. Hospice care is not giving up on treatment, it is choosing an alternative treatment that will align with your goals of care. Please do not hesitate to contact me or a hospice of your choice to discuss how hospice may be the help you have been seeking.
May we truly live each day as though it could be our last, as therein, we will find peace.
— Vickie C. Wacaster is a Patient and Hospice Advocate for Aveanna Hospice (formerly Comfort Care Hospice).