Sandhya Mudumbi, M.D., Palliative Care
I had a patient tell me this week that they didn’t want to go on hospice because they didn’t want to lay in bed and die. I can’t tell you how many times I hear that about hospice care, even from people in healthcare! People are not wrong to think this, because this is their experience – what they’re seeing out in the community. This is most people’s experience because patients agree to accept hospice care too late, often in the last days of their life, which only serves to reinforce the misconception that it should only be used in the last days of life.
If you asked professionals who work in hospice care, they will tell you that what they enjoy most about their job is getting to know people and help them and their families during the most difficult time of their life. It is tough to develop a meaningful relationship in just a few days, even though most of us try to do so. So, I’ll tell you from my experience practicing hospice and palliative care what the ideal scenario is and when things go well for patients and families. Officially, patients are eligible for hospice care in the last 6 months of their life. But, I will tell you, I have had patients who enter hospice care and sometimes live much longer and do much better because of all the support they are getting! The way I explain to my patients is that the goal of hospice and palliative care is to help patients live as well as they can, as long as they can.
What is part of hospice care? A hospice team typically consists of a nurse, nursing assistant, social worker, chaplain, and a medical doctor assigned to each patient. This team of professionals brings holistic medical care to you in the home to address all issues for both the patient and their family. They look at all needs – physical, emotional, social, financial, and spiritual, and work to address all of these. They also help pay for any medications related to their terminal illness and provide equipment in the home to help take care of the patient (walker, bedside commode, hospital bed, etc.). Because Hospice care does not include a 24/7 caregiver, patients typically need to have someone living with them. If this is not possible, hospice care can be provided in a nursing home as well. When families and caregivers do need help for a brief period, hospice care does include a period of respite for the families and caregivers, where the patient may be admitted to a facility for 5 days and can return home afterward.
So, when is the right time to go on hospice care? This is ultimately the choice of patients and their families, but in my experience, people get the most benefit the longer they receive hospice care.