When to Call Hospice

Nada Kinaya, PA

By Nada Kinaya, PA

When I accepted my job as palliative care nurse practitioner eight years ago, a Chaldean colleague told me I was crazy for taking the position and that I will not be able to get any Chaldeans into hospice. Although this was never my objective, I am glad to say he was wrong. 

The medical community has a long road ahead; hospice is still not properly utilized in our community. There are many misconceptions about hospice, and most Chaldeans do not begin to understand the benefits.

Hospice is a philosophy that promotes comfort and quality of life for a terminally ill patient with a prognosis that death may occur within six months or less. Hospice does not mean “do not treat.” In fact, it means to treat symptoms aggressively.

Hospice asks what we can do “for” the patient rather than “to” the patient. “How can we help?” In my experience, Chaldeans utilize hospice very late in their illness, and only in their last days or weeks of life. This deprives the patient and family of high-quality end-of-life care.

There are many barriers that prevent our community from electing hospice care, including a lack of education and understanding of what hospice is. We do not even have a word for “hospice” in our language; most Chaldeans incorrectly assume that hospice is assisted suicide.

I constantly find myself explaining to Chaldean patients that hospice care is very different from assisted suicide, and that assisted suicide is illegal in Michigan.

Another misconception is that hospice is not aligned with our Catholic faith. I often provide a copy of the Vatican’s stance on hospice. The Catholic Church believes that patients should be kept as free from pain as possible until a natural death occurs. In the Catholic faith, there is a moral obligation to use ‘ordinary’ but not ‘extraordinary’ medical treatment aimed at prolonging life, as the latter imposes excessive burden without benefit.

If there are language barriers with a patient, the medical community should utilize translators to educate our non-English speaking community members about the option of hospice.

The proper time to ask your physician about hospice care is when a person has a terminal illness and cure is not possible. Some of the most common illnesses that hospice care treats include cancer, heart disease, lung disease, dementia, stroke, liver disease, kidney disease, and ALS. 

An example of an appropriate use of hospice would be cases of metastatic (stage four) cancer, in which chemotherapy is no longer beneficial to the patient.  Additionally, hospice would be appropriate if a patient chooses to stop treatment, or if symptoms are unable to be managed. Research shows that pain increases in the last two years of life, becoming the most intense in the last four months. Hospice care is designed for these types of situations, enabling people to live better and possibly even longer when symptoms are properly managed.

Multiple hospital and emergency room visits can be an important sign of declining health and disease progression. Hospice is also appropriate when patient and families no longer want to receive medical care for chronic disease or illness in the hospital. Hospice would then bring the care to the patient at home rather than the patient to the care. 

For example, a dear family member of mine was diagnosed with a debilitating lung disease 10 years ago. I remember sitting in the hospital when our family was told her prognosis was less than two weeks. It was devastating news; she was one of the strongest women I knew, the matriarch of our family. We were lucky that we had a physician who took the time to sit with our family and explain the prognosis and options, which included experimental medication, without guarantees of cure or improvement. The other option was hospice. 

Our family met with the intensive care doctor and the palliative care team. She was asked for the first time in her long battle with chronic disease, “What is important to you?” 

Doctors are not trained to make a patient comfortable—they are trained to fix and save lives—but of course, this is not always possible. This was the first time a medical provider asked what my family member was hoping for and how/where would she want to spend her last days. My family member decided she wanted hospice. She elected to go home, to live her remaining days surrounded by those she loved and who loved her, in the comfort of her own home. 

Hospice met with our family and addressed all our spiritual and social needs. All the medications and medical supplies were delivered before her discharge. We were given everything we needed to make every single day as good as it could be. She was able to live her best life, given her illness, and hospice was available to us 24 hours a day to help her manage.

She survived three months, eventually dying surrounded by family. This horrible event brought our family together. We spent time with her daily. Her children and grandchildren were there, and we became closer as a family.

While it is sad to lose someone you love, I know she was comfortable and happy until her last day. I also know she did not suffer, and that she was given the autonomy to choose her own path in the end.

A big misconception about hospice care is only used in the last days of life. This occurs because patients often go into hospice so late in the illness. The reality is that patients can receive care for six months or longer, depending on their illness. I have personally seen patients survive years with hospice care.

The goal of hospice is entirely on the comfort and quality of life of the patient, rather than providing a “cure.” Ultimately, this is really what most would want.

Finally, another misconception is that hospice accelerates death. In fact, there is data that shows that at times, hospice prolongs life. Stress and uneasiness become quality of life and calmness. It is important to note that patients can sign off hospice if it simply is not right for them.

I know a terminal illness is scary and confusing, and death is never enjoyable. However, hospice is a great service if used correctly. I believe our community is slowly becoming somewhat familiar with hospice, but the medical community has a long way to go to educate the Chaldean community of all its benefits. 

Unnecessary medical testing and procedures that we demand from our ailing family members often lead to more suffering and pain at the end of life. As our Catholic faith teaches us, there is a moral obligation to eliminate suffering. In certain circumstances, by electing hospice we can achieve a good end to a life without pain or suffering.

Nada Kinaya has a Master’s in Nursing from Oakland University. She has been a palliative care nurse practitioner at Beaumont Hospital for the past eight years, is an active member of the community, and a proud executive board member of the Chaldean American Association for Health Professionals.