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Helping Families Talk about Hospice with Their Loved One

Mahveen Hussain | posted April 23, 2009 | Bookmark and Share

 

It is never easy to begin a conversation with a dying family member about hospice. But as a medical director with AseraCare Hospice, I have found that it’s best to do it before your loved one is in the final stages of life. The earlier you can have this conversation, the better the chances are for your loved one to be able to stay where they are, whether it’s at home or in an assisted living or skilled nursing facility. I have worked with hundreds of hospice patients and their families, and I believe an understanding of the following basic information about hospice can be very helpful in getting this difficult dialogue started.

 

 

When should hospice care begin?

The appropriate time to consider hospice care for your loved one is when they have exhausted all avenues to cure their illness, or have determined with their doctor that the negative effects of aggressive care for their illness outweigh the benefits.

Who starts the hospice dialogue?

Typically the patient’s primary care or regular physician is the first to initiate a dialogue with the patient about hospice care. Because they are the most familiar with the progression of the patient’s illness, I believe them to be the most qualified to recognize the signs when their patient is reaching the last stages of their illness. I feel strongly that dialogue is the operative word here. The goal in this situation is to present all options of care, and the final decision then rests with the patient and their family.

In my experience, it can also be a family member or even the patient who is first to bring up the idea of hospice. Many terminally ill patients intuitively know when their condition has deteriorated, and are wondering what the next step will be in their life’s path. I’ve been told by many hospice patients that discussing end-of-life options was actually a relief for them.

Hospice care myths and misconceptions

There are many myths and fallacies about hospice care that misinform and oftentimes prevent patients and families from turning to hospice care. I believe it’s important that these misconceptions are cleared up with your loved one, especially if they are unfamiliar with hospice.

A big misunderstanding about hospice care is that it means “withdrawal of care.” The opposite is true. In most cases we find that hospice patients find that their support system actually grows. Each hospice patient is attended by a hospice doctor, registered nurse, a home health aide, a social worker, pharmacist, nutritionist and volunteers. I’ve heard from many patients that they find they are getting more care with hospice than they were before. Hospice patients and their families need to be assured that help is no more than a phone call away, 24 hours a day, 7 days a week. Also, the patient’s regular doctor remains an important part of the hospice team thus ensuring continuity of care.

Finally, some people feel that hospice care guarantees an early demise. Not true. Hospice is intended to neither hasten nor prolong life, but to improve the quality of life that remains. Hospice allows the patient’s disease or illness to take its natural course. Interestingly, studies have shown that patients who sign up with hospice care can often live longer than those with similar diseases who don’t.

What to do once the decision to start hospice care is made?

It’s really very simple. Your loved one’s physician will contact the hospice agency and write an order. At AseraCare, our hospice staff will then contact you to set up an appointment at your location to initiate service. This can happen in just a few hours from when we receive the hospice order. As a hospice medical director, I feel strongly that the last thing a patient or their family should feel at this time is vulnerable or abandoned. It is my mission at AseraCare to make sure we fill that void, and preserve the dignity of death for our patients and their families. We believe there is no reason for anyone to die in pain or alone.

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