by Jody Neufeld
What words come to mind when this question is posed: What is a life with quality?
Humans have wrestled with the concept of quality vs quantity of life, ever since medication was discovered to both heal disease and prolong a life. With technology, we can keep a 20-something athlete with a brain injury alive almost indefinitely. Cancer, neuro-muscular diseases, chronic lung disease, Alzheimer’s and other dementia continue to be some of the difficult life-journeys which bring us, not just as a family or a community, but as humanity to the question of defining a quality life vs. the quantity of that life.
Thirty years ago, I (as an RN) left my job as a critical care nurse in a hospital and took a job with the local hospice. It was a relatively small hospice with an average patient census of 25-30 patients over a four-county area. In the next decade, it would grow to over 400 patients, covering a six county area and be ranked in the top 25 hospices in the United States.
In the 12 years that I worked with hospice, we went from the National Hospice Organization which “took care of dying patients,” and after much public education, some people, like doctors and social workers, now know that the organization is actually Hospice and Palliative Care. What is the difference?
Hospice does not just make sure a patient is clean and dry and support the family as everyone waits around for the last breath. The hospice team (nurses, doctors, social workers, homecare assistants, chaplains, volunteers, pharmacists and the family) actively create a plan of care for the patient that will give them life in each day! Nurses are available 24/7 to answer questions and make visits whether it is 2 o’clock in the afternoon or in the dark morning. With so many medications available to help control discomfort and so many different ways to give the medication, I submit that pain is always controllable in patients with a life-threatening illness. Yes, I have had to sit families down to have a difficult conversation which explained that the two options open were: awake with pain or sleeping without pain. But out of control “torment” should never describe a hospice patient’s situation.
In my time with hospice, I saw the aftermath of 12 suicides. The families were devastated. All but four were done with handguns. The cleanup, not just of the physical location, but of the families’ shock and mental anguish was very hard to watch. Our counselors found the bereavement period was often indefinite. Families had to process not only their loved one’s death but what they perceived as their inability to meet needs or know their loved one’s mind and do whatever to keep them comfortable.
If you know someone who is caring for someone who has been told that curative treatment is no longer an option for their life-threatening illness, or caring for someone who is experiencing pain and discomfort which is creating a life without quality, encourage them to consider hospice. The National Hospice and Palliative Care Organization can give you a list of hospices in your local area. If you know someone who has received care from a local hospice, a personal recommendation is always good. Many hospices now employ physicians as part of the care team who are well educated in palliative care and will even make house calls! Options in pain control may also include daily assessment by the patient’s assigned RN, so that the administration of medication and non-pharmaceutical treatments are carefully monitored and, what I used to call, “dialed in” to balance with the person’s pain.
Let me quickly answer just a few questions that are often asked about hospice care:
- Once I sign up for hospice care, can I change my mind? Of course!
- How much does hospice care cost? Most health insurance policies (now!) have hospice benefits. Like in any other medical treatment, ask up front how a particular hospice does billing. The hospice I worked for was a non-profit and patients did not pay any fees. Each hospice is different so ask questions.
- Are all hospice patients placed on morphine for pain control? No. While morphine is an excellent drug for the pain management of advanced cancer, there are several options. My son who died from cancer (rhabdomyosarcoma) only required Tylenol #3 (codiene). This is why the field of medicine is an art, not a science. Each person must be assessed individually.
- Are all hospices the same? No. Like hospitals, there are non-profit and for profit hospices. Some have inpatient facilities. Some “specialize” in the care of children.
I hope that while what I have shared here is a preliminary overview, it may encourage those who are struggling in a difficult situation to know there are options. As I was scanning the Internet for “what’s new in palliative care,” I found a website called “Next Step in Care.” It had some wonderful information about hospice, home care, and facility care. Assisted Suicide is not the only option; I do not believe it is even the best option.
And finally, as a hospice team member, the daughter of a hospice patient, and the mother of a hospice patient, I have stood as a witness in the final months and weeks of someone’s life. It can be a time to reflect on good memories and share heart-felt words which may bring healing in the spirit to the one moving on and comfort in the days ahead to those left behind.