Unfortunately, despite heroic efforts by patients, their doctors, and their families, ATC may progress to the point that patients may have to face a choice between continued treatment, to sustain life with low quality of life, or discontinuing treatment and trying to maximize the remaining quality of life.
The timing and choices are different for everyone. These decisions can be made only after patients carefully consult with their physicians and their families.
Hospice is an option available to those patients who wish to discontinue treatment and focus on making their remaining life as comfortable as possible.
Hospice is open to patients whose physician declares that they have less than 6 months to live. All treatment meant to sustain life must cease, including chemotherapy and radiation, unless the purpose of the treatment is for comfort (known as "palliative care").
Most areas have hospice organizations. Many provide hospice care in the home or in a hospice facility or in a hospital.
Hospice doctors and nurses visit the patient as needed and provide comfort care and medicine for pain management. Often, the patient's families can administer medications as needed, which ensures that patients receive immediate attention.
Hospice nurses are on call 24 hours a day. They can make middle-of- the-night visits if necessary. Hospice is generally covered in full by Medicare and many other insurance plans.
Hospice also provides many other services as needed and desired for patients and their families. These include psychological and spiritual counseling, respite services for family members so they can take breaks from care, and bereavement services for family members.
For a discussion of ATC at the end of life, see the section titled ATC and End of Life.
For a caregiver’s thoughts on Hospice, see the section titled ATC Hospice Thoughts.
It is common for both patients and their caregivers to wonder, and worry, about how ATC causes death. This is a complicated question, because there are many structures, both in the neck and in distant metastasis, that can be affected. So this is a highly individual issue best addressed by the patient’s doctor and hospice team.
In general, there are some common ways for ATC to cause death. Metastasis to the lungs can result in a gradual loss of oxygen to the brain, causing the patient to peacefully slip away. The tumor site in the thyroid could grow and affect the arteries to the brain, causing a stroke. The tumor could also constrict the esophagus, making eating difficult or impossible without a feeding tube, causing starvation. Although a trachea tube can prevent a constricted trachea from interrupting breathing, other respiratory complications, such as aspiration pneumonia caused by fluids entering the lung, can occur. It is also uncommon, but possible, for the tumor to rupture arteries or veins, causing a bleed out.
In many cases, complications to the immediate neck area can be avoided with radiation or surgery aimed at providing comfort, not cure. This is known as palliative care.
So, while it is common for patients and caregivers to imagine horrible situations because of the ATC tumor location, the majority of deaths, aided by hospice-provided medications, are peaceful and, if desired, can take place in the home.
The focus of hospice is not to sustain life, but to make remaining life as comfortable and pleasurable as possible.
Hospice teams are the experts on pain management. They also can offer many additional services (for example, emotional and spiritual) for the patient and family, as needed and desired.
Hospice is a wonderful thing. The hospice nurses are angels.
We must respect and support the decisions of our loved ones—helping them fight if they want to fight; helping them die if they choose not to fight. Not fighting is not a sign of weakness.
With the aid of hospice, I suspect that most, like my father, die in reasonable comfort and dignity. I must say that the best part of this ordeal, from my father's perspective and ours, was the interaction with hospice. I think that knowing more about the end stages will be of comfort to patients and their families, because, otherwise, people just naturally imagine the worst.
Hospice has nurses who visit the patient as often as necessary, assess comfort, order equipment and medications as needed, and instruct the families on how to provide care.
Most importantly, they talk to and treat the patient with dignity, respect, and compassion. This can be as powerful as the medications.
They provide information on the various signs and stages of death, which is very helpful.
A nurse is available 24 hours a day by telephone for questions and, if necessary, a middle-of-the-night visit.
While ATC seems to progress in very individualistic ways, I suspect that our experience is a common one. Also, my spouse is a social worker for a hospice, and I can assure you that our hospice experience was VERY typical.
I can't say enough about the people who dedicate their lives to helping others die in comfort and dignity.
For further information, visit the web sites of the following nonprofit organizations:
- Hospice Foundation of America: http://www.hospicefoundation.org
- Hospice Net: http://www.hospicenet.org
Last updated: March 23, 2006