Hospices have been facing new challenges lately.
Referrals are coming in so late which result in patients only receiving the benefits of hospice care for hours to days, or maybe a week of service. We are getting more and more calls with urgent “911” emergency – “need visit as soon as possible, patient is actively dying.”
This breaks my heart.
It breaks my heart because I know that most of these patients qualified for hospice probably for many months prior to the referral. It also means that there are a great number of patients and their families who will not receive the full benefits of hospice care. They do not have the opportunity to really get to know their care team: to have the heart-to-heart spiritual conversations with their pastoral team member, or to talk to their social worker about their loved one and the person that they were before the disease took over. All of this takes time; time to build relationships and establish trust.
Instead of the rich experience hospice can be for the patient and the family, hospice care by necessity turns into last minute symptom management to keep the patient comfortable during the dying process. This very-end of life care is needed, and is done well by the hospice team, but families could have received that and much more.
So, caregivers: how can you change this epidemic? Give your loved one the “gift” of the opportunity to have an important conversation. Talk to your loved one about their goals of care. Many patients tell us when we ask what their goal is – “No one ever asked me that before.” Talk to your loved one’s physician – be proactive and have the conversation about the treatment plan and make sure that the plan lines up with your loved one’s goals of care.
And then, think about all those questions yourself, and write down your own wishes.