Alright, we’ll just be blunt – you will be hated and seen as the enemy by some patients and their families when you bring up the ‘H word.’ On the contrary, you’ll also be loved and have some of the most meaningful patient care of your career in helping transition a patient into Hospice care. You will have families who’s understanding and view of Hospice care translate to “giving up.” You’ll also have patients and families who have been hoping and waiting for someone to approach them with the idea of transitioning goals of care instead of another round of chemotherapy or aggressive surgery. This unique spectrum of patient perception, culture, and values make these conversations as complicated as they are diverse.
In the ideal world, you’d be able to approach from a Palliative care standpoint, and overtime, transition into a Hospice discussion as disease progresses to end stage. Unfortunately, in American healthcare, we push the most with medicine, with arguably the poorest outcomes per diem. This is evidenced by us having the highest expenditure per capita on healthcare in the world, but still being ranked 37th in overall health outcomes. It is also evidenced by us having literally twice the death rate in ICUs compared to every other country. The most common scenario you will encounter, unfortunately, is in bringing up Hospice and Palliative medicine near end stage diseases.
The first step in even approaching the subject before you say the ‘H word’ is to assess the patient’s understanding of their illness and perspective of their current state. Atul Gawande has done an excellent job summing up five questions to ask and begin this conversation in his book Being Mortal:
1. What is your understanding of where you are and of your illness?
2. What are your fears or worries for the future?
3. What are your goals and priorities?
4. What outcomes are unacceptable to you? What are you willing to sacrifice and not?
5. What would a good day look like?
You won’t be able to fully understand everything you want to know about a patient’s end of life care wishes and goals until you understand them as a person. These questions help begin that conversation. As Dr. Tom Townsend, a Family Medicine physician who has helped found three hospice houses says, it’s not a singular discussion done in one hour, but rather, dozens of conversations had over time. Remember this as you prepare to enter a patient’s room and begin the process of discussing end of life care, specifically Hospice and Palliative. Ask these questions. Use silence. Wait for their responses. Be present. It may take a few conversations with patients and their families while in the ICU instead of just one to ask all of the questions. Give them time to process the information. Remember, your agenda and checklist for the day does not always coincide with a patient’s, as you’ve already learned in medicine. Be patient. Be present.
The Time Game
The ironic thing about Hospice and Palliative care talks are that you’ll have to be very patient with families, especially when they want to fight on, and time is the thing that’s lacking. It’s well accepted and documented that introduction of Hospice and Palliative medicine early in disease progression improves overall quality of life, reduction of symptoms, and even improves overall survival time. Be patient. Be present.
Dr. Mike Gosey, MD worked as a Hospitalist for 6 years, and for the past 4 years, has worked as a Hospice and Palliative care physician. In discussing Hospice and Palliative care in patients, he makes a singular statement worth remembering,
If you can help a patient die in a way that the family remembers the person, and not the death, you have been a success.
He goes on to say that when broaching the topic of Hospice and Palliative care, and after having assessed a patient’s perspective of illness, it’s important to remind patients that we hope for the best, and prepare for the worst. He also warns patients and their families in advance he is about to discuss something difficult – that a patient is near the end of life, and we as a providers need to begin planning and understanding their wishes for care. It’s in these moments the importance of personal medicine is never more evident. Sitting at eye level, whether that be in a chair or next the patient in their bed. A personal touch on the shoulder or hand holding is ok in these times if it feels appropriate.
Dr. Gosey, in these discussions tells patients it’s ok to cry, and uses the phrase,
I cry, and it doesn’t bother me that you do.
These are incredibly vulnerable moments in a patient and family’s lives. Tension, emotion, and physiological stress are at an all time high. He follows up with the question,
Are you at peace? If not, why?
As part of Hospice and Palliative care, coping is a large portion of care – coping with new losses as they come. Patients will need you just as much as family – be sure to incorporate them in discussions. Caretakers of dying people are sometimes more scared of death than the actual patient, because it brings to light the potential of loneliness, questions of doing the wrong thing – I don’t want to kill dad, give him the wrong medicine, turn him if he’s not in pain – they don’t want to hurt their loved one. Always affirm the good care they’re providing, “Debby, you’re just providing such great care for your father.” Alleviate some of that stress and burden from family.
There are some important definitions and questions you will have to mitigate in discussing Hospice and Palliative care with patients and their families. Being prepared with the basic information will go a long ways in your discussions, so we’ve bullet pointed the major points of Hospice care:
- it is for people believed to have less than 6 months to live
- can be stopped and started at will; patients are not “locked in” once they sign up
- patient does not have to be DNR
- it encompasses support of psycho-social, spiritual, existential, physical, emotional issues, and respite care for caregivers
- 24/7 care as much or as little as needed
- bereavement counseling for 13 months after death
- 15% people graduate (level off or get better) after enrolling
- 90% of people want to die at home, but over 50% die in the hospital
At this point in your multiple discussions, it’s also important to introduce Advance Directives and/or POST forms. Use the words,
We’re not saying you’re going to die, we just want to make sure to align what you want done in regards to your care and what we do. We want to figure out your care goals so we can meet them. It’s a beautiful gift you can give your family. Without telling your family what you want done, it can be a huge burden for them if they are asked to make decisions regarding your care when you can’t.
Benefits vs. Burdens
Any intervention in medicine offers both benefits and burdens – a give and a take. Using this phrasing is an easy way for patients and their families to see black and white when you’re assessing their goals of care. By simply asking someone or their family if they want tube feedings via a PEG and to continue breathing via a trach, they’ll see that as continued living. Guess what? They’ll choose both every time; however, explaining the benefit of a trach as being able to continue breathing, but the burden being ventilator dependent and bed-bound for their remaining days paints a different picture for patients and their families. Delineate these two and watch how much easier conversations can open up.
Explaining Signs of Impending Death
Families and patients will often ask you “how will it happen?” Even if they don’t ask, when the time is right, ask families if they want to know the signs of impending death. They will appreciate your honesty, because these are scared people that need all the guidance they can get. At minimum, these 4 bullet points are key to explaining the process and will be sufficient for a patient’s family:
- mottling of extremities, cooling down
- a decreased appetite or not being able to eat
- decreased urine output
- changes in breathing patterns, may have long pauses in breathing
Dr. Gosey reminds us,
When someone is dying, you only get one chance at it. You don’t get any do-overs. Be prepared, having things talked out ahead of time. Be compassionate, listen, see if they have questions and answer them the best you can. Let them know you’ll be with them the entire journey, that you won’t abandon them, and there’s a lot we can do to you at peace and comfortable.
May your words be kind, gestures gentle, and compassion at the peak of your emotional capacity as a human when talking with families in these moments.