Advanced prostate cancer will eventually end, barring another cause of death, with the demise of the individual survivor. Knowing that you suffer from a terminal illness is hard, it is hard on the family and it is hard on the individual. Many of us don’t think about it, but it is also hard for many of our healthcare professionals.
We all have great difficulty dealing with the thought of the eventual and then the actual death of our loved one. In many cases this difficulty also extends to our healthcare professionals. Like the family, they need to find a way to come to grips with this eventuality. For some, the death of their patient signals their personal failure, for others it is the end of a long-term relationship. Of course, for others it is simply another day at the office.
For those heath care professionals who do feel the loss in some way, they need to understand that a patient’s death belongs to the patient and their family, not to the healthcare provider. As long as the healthcare professional had provided the best care possible, they need to put aside their own personal issues in respect to the family.
What do I mean by this statement? A healthcare provider’s role should be to support the patient and to their family. This means being present for them in a way that the patient and the family dictate and need, not in a way that responds to the healthcare provider’s own personal needs or grief. The healthcare provider needs to suppress their own personal feelings in favor of the feelings of the patient and the family.
Given that healthcare providers are people too, this can understandably be difficult. It is difficult when they need to deliver bad news, but they must remember no matter how hard this might be it still is much more difficult for the family who is being given the news.
They need to put up their antenna and listen to the family and then find a way to deliver to the family what they need. They have to know when to stay physically present with the family members and when it’s time to let them be by themselves.
When healthcare providers do need to grieve they should grieve, but it needs to be a private grief that isn’t expressed in a way that interferes with the patient’s or family’s grief. This grief first belongs to the patient, and then to the family and to the patients loved ones. Their grief comes last.
In some cases, when a patient or family views a healthcare provider’s grief it will help them. For some, knowing that the healthcare provider also felt a loss can be supportive. In other cases it will not provide any comfort, just serve as an unhelpful and seemingly selfish distraction.
Generally, a professional’s grief is better expressed outside the hearing of the patient and the family. A sensitive healthcare professional will know their patient and the family well enough to make a good assessment and then respond accordingly.
As a patient and their family come to understand that they have exhausted all treatments options that might extend life they will enter into a morning period. This period is to be expected.
What is important is how the healthcare professionals support the patient so that they can come to a place of peace and continue to live the remainder of their life with as much quality as possible and with personal dignity.
This mourning period is a period of transition, accepting the eventual outcome. This is among the most difficult tasks any of us might experience. My experience derived from sitting and talking with my brothers as they enter this life stage is that family, doctors, as well as other healthcare professionals can have an extraordinarily positive or negative effect on their ability to come to a positive resolution.
Those men who are able to more easily find peace are those who have healthcare professionals and family members who make it their point to have a very specific discussion as outlined with the survivor, no matter how hard the topics and their own individual personal feelings.
This discussion involves at least 5 very specific questions. Having a conversation around these points if often transformative for everyone involved, the patient, the family and the healthcare professional. They include:
- What is their understanding of their health, their condition and their prognosis?
- What about their life is most important to them? What would they be doing now if they were able?
- What are their goals if their health worsens?
- What are the fears they are feeling?
- What are the trade-offs they are willing to make and not willing to make as they live the rest of their life?
These conversations should not a one time affair, but must be repeated regularly, over time. Survivor’s answers change as they move through the disease progression and their own grieving process.
By clarifying these points both healthcare professionals and the patient’s family can get to know and respect a survivor’s priorities. It allows the survivor to take charge of their life, a state of affairs that for the cancer survivor at this stage is grossly lacking. Then, it behooves all involved to put aside their own, personal feelings and to honor and respect the survivor’s desires.
This can be very hard, but by asking these questions, understanding a survivor’s desires and concerns we can allow them to be themselves and live the remainder of their life with them being in control. Being in control of our life is important for the newly diagnosed as well as those who are end stage. We all want and need to control our destiny, no matter what that might mean.
In some states it is possible to offer a person what is referred to as “death with dignity” or assisted suicide. Many people who might choose this option because it seems to them to be the only chance they have for control. Many people at this stage feel they have no options.
I believe that by hearing the information provided by asking these 5 questions, especially the questions about personal fear and what is the most important things in their life, a survivor might regain a feeling of personal control, possibly leading them to other options which otherwise would not be considered.
Having options might help a person to consider alternatives to suicide. I am not saying that I have an issue with medically assisted suicide, but I do feel that all options and possibilities need to be explored.
Options can be as simple as entering into hospice care. If you boil down the underlying goal of hospice it is to give a person a good day. Many men with very advanced prostate cancer have not experienced a good day in a long time. Their quality of life and feeling as if they have no options makes a terrible situation even worse. Providing good days, what ever that means for an individual, is a good goal.
I am aware of a specific hospice nurse, upon her initial meeting with a patient asked the five questions, including an emphases on what this man cared most about his life (or what having the best possible day would mean).
This dedicated, loving hospice nurse set out to make this happen so that my friend was able to experience the best possible day he could. This meant getting a hospital bed put on the first floor of his home so that stairs were not required to reach the kitchen and living room so he could be with his family. It involved a major adjustment in his pain medications as well as help cooking meals, bathing and dressing each day as well as having a comfortable chair placed in his backyard where he could sit and meditate in the sun and watch his grandchildren play.
Once these very simple and straightforward items were in place, my friend’s level of anxiety decreased significantly. His pain was better managed and he became a new man with a new interest in life.
Shocking to all of us who knew him, this new man was able to move on to his next goal, go back to teaching (on a modified schedule) as he had told the hospice nurse that his teaching was the most important thing in his life. Being in front of a classroom again was his dream; he reported that it had completed his life.
For him it might well have been the best day of his life, actually the best 4 months of his life because he was able to return to his classroom and complete the school term with his students!
We need to ask the survivor these five very important questions again and again as we can make a huge difference in a person’s life. We need to find ways to hear our patients so that we can return control of their life back to them and give them the best day of their life.