Will your hospitalist know your last wishes?
How do you want to spend your last days of life? If you’re sick with an incurable illness, do you want to prolong treatment? Have you let your family or a close friend know?
Unfortunately, in many families, that question doesn’t come up until the end, which makes it harder for doctors to follow your wishes.
“Often as a hospitalist, I utilize my palliative/hospice training since we have people coming in to us for general admission but then you realize they are in the middle of palliative chemo with terminal cancer or they’re at the end of their life, but they have not had a conversation yet about end of life and what their wishes are,” said Amanda Ortengren, D.O., who works at Cape Cod Hospital and is trained in palliative and hospice care.
Not everyone is prepared to talk about death, even if they are very close to the end. Because of that, Dr. Ortengren’s first question is usually geared towards opening the dialogue about end of life and what their wishes regarding treatment are, or if they would rather not have the conversation about prognosis or end of life.
“Either way is fine with me,” she said. “Typically, I find that over a day or two, if you have opened the door for prognosis and end of life discussions, they’ll start to revisit it and I’m able to have that conversation with them.”
Whether a person wants to pursue rigorous treatment or just comfort care is a very personal decision. Sometimes it depends on age. A young mother with stage 4 breast cancer might decide to fight as long as possible in order to spend as much time as she can with her children. While an older patient, who has been very sick from chemotherapy and has other illnesses, might decide to seek comfort care and enjoy the remaining days free of pain and complications of some treatments. However, even pursuing aggressive cancer treatments does not curtail the early involvement of palliative care, Dr. Ortengren said.
There is no one-size-fits-all answer when it comes to end-of-life decisions. Doctors are willing to do whatever the patient prefers, but it’s helpful for them to know what those preferences are.
Listening to Patients
Dr. Ortengren has had family members pull her aside and ask her not to use the ‘hospice’ word. Some of those patients ask her to talk to them about it privately when the family isn’t around.
“I think you have to be open to having those conversations and really understanding what the goals are for that person,” she said. “When I sit down with patients and talk about end of life, and start to walk down that road with them, I ask if they want to know how much time they have left. What their goals and fears are, are there things they would like to accomplish. ”
Doctors from experience can, at times, gauge how long a terminal patient may have left. A lot of people appreciate that information because it gives them a chance to think about what things they still want to accomplish during their remaining time. Maybe they would like to take a final trip or live long enough for an important milestone like a wedding or graduation.
“Listening is the key and I think that goes for everybody – the physicians, the caregivers, the family,” she said. “Just listen.”
Dr. Ortengren also takes the needs of the caregiver into consideration because it’s easy for caregivers to become burned out, especially after a prolonged illness. She provides resources to help them come to terms with the decision for palliative or hospice care.
Palliative care can be embedded within hospice and typically helps to establish a team that will help both the patient and family with symptom management, including pain or other issues pertaining to their disease. As a person becomes progressively sicker, then they may move towards hospice care where the goals center on comfort and helping to navigate end of life.
“The earlier you involve palliative care and hospice care, the better the quality of life for the patient in the long run,” Dr. Ortengren said. “I think hospice still invokes fear in people. They just assume that the minute you say that, it’s morphine and death, versus this is just the beginning of that process.
“The hardest thing for people in understanding palliative care and hospice is it does not mean that we just prescribe morphine and you do not get further treatment. It includes a variety of services from counseling, social work, nursing, pain management, symptom management and treatment of infections. It’s tailored to help the individual and their family navigate the end of life together; to help improve quality of life at the end of life. ”