When is it time to call hospice?

June 21, 2017 1:39 pm

A provider’s perspective

When faced with a life-limiting illness, patients and families have many decisions and plans to make. Often, difficult conversations must take place. One of those discussions may be, “Is it time to call hospice?

We talked to Dr. Joni Goldwasser , DNP, FNP-BC from the Salem VA Medical Center about how she advises patients and families on hospice care.

“Certainly we ask the obvious questions, ‘Are there 6 months to 2 years to live? Is it a terminal diagnosis or deteriorating chronic condition?’ There is not always a clear answer when it comes to the timing for recommending hospice care,” Goldwasser explained. She says she reminds her patients and families that as the condition advances or symptoms progress, hospice care will help improve the quality of their day-to-day life. “This type of care shouldn’t wait until the very end of life because hospice brings in the whole management of physical, emotional, social and spiritual care that patients and families benefit from earlier.”

“There are several factors that prompt a hospice discussion,” she said. “First, what is the health problem and is it not improving with treatment?” This can be related to a chronic condition such as heart failure or emphysema, ALS, Multiple Sclerosis; a malignancy or cancer or the situation where the patient simply chooses not to pursue treatment any longer. “I like to look at the whole situation when advising families,” Dr. Goldwasser explained. “With some diseases it is very straightforward, like end-of-life cancer treatment when the options have failed. However, it becomes more difficult with heart failure patients, COPD, neurological illnesses or dementia, when the patient’s condition has become terminal and the care they are pursuing is not making a difference.” If the office visit reveals that a patient may not be living in 6 months to a year, it is time to discuss hospice care.

According to Goldwasser, the choice is very personal. “When patients have devastating illnesses like ALS or Lou Gehrig’s disease or have become bed-bound, sometimes they just don’t want to pursue further treatment,” she said. “For example, patients with COPD, whose ability to breathe continues to worsen and they are already on all the medications available, sometimes choose to stop the fight.” Other chronic diseases such as multiple sclerosis or muscular dystrophy may also lead patients down a similar trajectory of choosing to call hospice instead.

Many times Goldwasser will recommend hospice care even when the patient is already in a nursing home. “There’s a lot of extra help, including more dignity, in combining the care,” she said. “Nursing homes may provide bathing assistance twice a week, but if you have hospice care as well, the patient can receive additional bathing and personal help which often increases their level of comfort.”

She suggested that another reason providers should not shy away from a discussion about hospice is that it often promotes family communication. “When the provider takes the lead, it can help both the family and the patient ask questions in a comfortable setting. Many times the patient is grateful that the healthcare provider has brought up the topic. A candid discussion with facts also helps the family member support the patient’s wishes.”

Likewise, the family often feels relief when the subject of hospice is raised. “Families feel responsible and do not want show lack of support for loved ones. Yet, today’s families have very busy lives and can live at a distance. Knowing their loved one is supported by hospice is very reassuring,” explained Dr. Goldwasser. “I referred a gentleman for hospice care whose son lived in California and was not able to travel to this area very often. This patient received excellent care and the son was relieved and appreciative.”

Like providers, hospice can act like a third party for the family who is struggling with the difficult conversation. A hospice consult helps to further facilitate the dialogue and develop a plan that may not be implemented until further down the road. The goal is to start the dialogue early to relieve some of the stress later.

Goldwasser also added that many people do not realize that hospice care is covered by Medicare, Medicaid, private insurance, as well as covered by the Veteran’s Hospital benefits in most cases; once a patient meets eligibility requirements.

Another reality often overlooked is that patients do ‘graduate’ from hospice. Under this specialized service, they receive comprehensive care, symptoms are managed and the focus is shifted to living in whatever time remains. “Recently, I had a patient with heart failure who improved and hospice was no longer needed,” explained Dr. Goldwasser. “Situations like this are rare, but do occur.”

“Patients and families should feel comfortable bringing up the topic of hospice care with their healthcare provider, using whatever words they need to communicate concerns,” Dr. Goldwasser concluded. “Providers should also not hesitate to bring up this topic. The bottom line is to evaluate quality of life, elevate dignity in decision-making and outline likely outcomes based on the decisions made.”

 

 

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