Interview with Penny Hawkins (hospice nurse)
Penny Hawkins (“Nurse Penny”) is a hospice nurse and influencer; she shares stories and advice on her TikTok and Instagram platforms, encouraging everyone to have open conversations about death and end-of-life care.
What is hospice and what do hospice nurses do?
Hospice is end-of-life care for people who are terminally ill and for whom there is no further treatment available, or who have decided to discontinue treatment for their disease. The focus is on quality of life over quantity of life. It is person-centered care and includes medical, psychosocial, and spiritual care. The family is included in the plan of care and grief support is provided to them post-patient death.
The primary role of the nurse is as the case manager and interdisciplinary team lead. There are also ancillary nursing roles for phone support and after-hours visits. The nurse does everything from communicate patient needs and receive orders from the patient’s physician to skilled nursing and symptom management. A very important role of the hospice nurse is to educate the patient and family on care of the dying person and to normalize the signs and symptoms of the dying process.
Why did you decide to start sharing information and stories about hospice?
Aside from being a passionate advocate for hospice, throughout my career as a hospice nurse I’ve seen how people are really helped with their fear around death through the normalization of the dying process. I suffered from death anxiety when I was younger and I’ve learned that by talking about death, and learning about death, that anxiety can be resolved.
I loved your video on the 5 things dying people want most to know. Could you share them here?
Dying people most want to know that:
· All has been forgiven
· Their life had meaning
· Things they were responsible for will be taken care of
· They will be remembered
· Their survivors will survive without them
In your experience, are there any common deathbed regrets?
I really can’t recall anyone every discussing regrets with me. The focus of the dying person is usually trying to embrace what life they have left rather than to perseverate on the coulda woulda shoulda things from their past.
Talk to me about what’s happening when a dying person starts refusing food or drink.
The human body knows how to die just like it knows how to be born. When a person is dying a natural death (meaning no medical intervention to prolong life), it systematically shuts down. Energy conservation is imperative to keep the vital organs going until the very last. Digestion takes a lot of energy, so the body intuitively sends the message that the person isn’t hungry. Also, calories and nutrition are no longer necessary.
How do you manage your own death anxiety? You’ve said that knowledge, power, and humor are great coping strategies!
Yes! Knowledge is power! People are afraid of death because it’s not often talked about… it’s a taboo subject. It’s human nature to have a fear of the unknown. The more we talk about it and know about it, the less frightening it is. I don’t suffer from death anxiety anymore because of my willingness to discuss it. And aside from the fact that humor is a coping mechanism, I feel that by lightening up the dark subject of death it’s more digestible. Sometimes I feel like by making fun of dying through the use of dark humor, in a way I’m laughing at it. Better to think it’s funny than scary I guess!
What should dying people know about CPR vs. natural death?
CPR if done correctly is very traumatic. Ribs can be fractured in the process. A person who is dying is frail and even more susceptible to harm. The likelihood of being able to resuscitate a person who has died is slim to none. But in the cases where a hospice patient has been resuscitated, they woke up in a lot of pain from the injury and they weren’t any better off than they were before they went down. They are still dying of their disease.
What are your thoughts on MAID (Medical Assistance in Dying)?
I’m a proponent. I think it should be federally legal and accessible to all who want the option. As much as we would like to think that hospice can provide a great death free of suffering for every patient, the reality is there are some things we can’t control. Physical discomforts are more easily managed than existential suffering. There are cases where we have to do palliative sedation and essentially put the person to sleep until they die from their disease. I question if there is a big difference between that and being able to take medications to speed up the process. The person is already dying, they are just making the decision of when and how that will happen.
How do you respond to people who want to withhold pain medication from a dying person for fear of possible addiction?
Using a pain medication, or any medication used for symptom management, that has been ordered by a doctor isn’t the same as seeking to get high from a drug. Those medications were created to be used in that manner.
Having provided hospice for patients of different beliefs, is there anything unique/notable about the atheist’s (non-believer’s, skeptic’s, etc.) approach to death, or experience of dying?
There has honestly never been anything I’ve observed that was note worthy. People all die similarly. Even deathbed visioning can happen with people of no faith as much as those with faith.
Have you thought about how you would like to die?
Of course my answer will be what most people would normally say; at a very old age in my sleep in my bed! But if I was to learn I had a terminal illness it would depend on what I was facing. I may choose to end my life with MAID which is legal in my state. For sure I would want my family to be with me, especially my children, reminiscing, laughing, and listening to Partridge family music! I would definitely not be opposed to trading a more sedate experience over withholding pain meds. I want to be comfortable.