The End Stages of Life

In this conversation Judith Redwing Keyssar  explains the terms “hospice” and “palliative” care, which are the end stages of life. She also shares about self-care for caregivers and cultural differences in death and dying.

6. People oftentimes think of hospice as “giving up on a loved one.” How would you respond?

NO, NO, NO. Hospice is NEVER about giving up. Dying is not about giving up, it is about letting go. We all must die. Some young, some old, some in the middle. And dying is not easy. Hospice is simply a medical team that helps people and their families through a very challenging time. Unfortunately, because hospice is not often utilized adequately, and people are too often referred to hospice in the last weeks and days of life, it has a reputation that hospice is only about “death.” When really hospice AND palliative care are about helping people LIVE as fully as possible UNTIL they die. We really need to change the perception of hospice to a much more positive outlook on providing assistance and support at an important time of life. EVERYONE who is dying at home should have a hospice team, and as SOON as they understand that they are not going to pursue a “cure” to their disease.

7. What are some of the ways we can make sense of death? In other words, how can we continue to “live” and function beyond loss?

It takes work. Read, discuss, talk about death. Show up and be present for death. Learn what it means–that death is simply part of life. Go to grief groups, if that is helpful. Find a good therapist. Find good friends whom you can talk to. ALLOW yourself to grieve fully so that one day you realize that you have had a week without grief, and then maybe a month or a year. Read books that talk about life and death. Go to workshops that allow you to experience impermanence for yourself. Loss and sadness are simply parts of the spectrum of a life experience. Neither good nor bad. It is our attachment to the past that keeps us from moving forward in life. We need to find ways to work with those attachments.

8. Could you clarify the difference between “hospice” and “palliative” care for the benefit of my readers?

Palliative care is about providing an added layer of support to people with serious or chronic illness. It is often about relieving suffering, from a holistic perspective–physical, emotional, spiritual suffering–acknowledging that there are many types of discomfort when someone is ill. Palliative care is also the philosophy of care at the foundation of hospice. So hospice always includes palliative care, but palliative care is much broader than hospice. It is not based on a terminal diagnosis and can be accessed at any time during an illness–from the day of diagnosis until the end of life. Palliative care is typically provided by a team of professionals that include doctors, nurses, social workers, chaplains, and often, volunteers.

9. How can people give their loved ones permission to leave without feeling guilty?

Guilt is a personal issue or problem! One must examine why they feel guilty about someone else’s life circumstances, or their own. There is a syndrome called “survivor’s guilt” which is: Why isn’t it me who is suffering? Giving a loved one permission to die, to leave the struggles of this  life and their illness behind, is an act of love and generosity. Comforting someone who is dying is an act of great care.

10. Our healthcare system is focused on saving life at all costs, often to the detriment of quality of life. How can we be advocates for change in getting healthcare to adopt a more holistic view of a person as body, mind and spirit?

Again, every chance we get, we must advocate for healthcare reform to include advance care planning and discussions about quality of life and end-of-life wishes. We must make sure that everyone we know has their advance directive completed and has discussed their wishes with their loved ones and their healthcare teams. We must DEMAND access to Palliative Care professionals, not just when a doctor makes a referral. We must educate ourselves and our loved ones about palliative care, about what dying really looks like, and have conversations about it. We must take death and dying out of the closet and celebrate it as part of life. Invite me to give a talk! Read my book and have a book group discussion! SHOW UP for people in hospitals and advocate for what they really want. Understand what life support really means to you and to your loved ones. Maybe it is not about hooking everyone up to machines and IV drips. Maybe “life support” is about supporting their life in whatever condition they’re in, even if they’re dying. VOTE for people who want to improve healthcare and increase budgets for hospice rather than decrease it. Demand that your doctors treat you with respect and listen to what you want.

11. What would you say about self-care to caregivers who are struggling with the care of a loved one who’s dying?

Self-care is critical. You cannot be present for someone who is suffering if you cannot be present for yourself. Being a caregiver to a person who is critically ill is a really hard job. You need breaks (It is also important to have the details of paperwork and decisions about end-of-life wishes done ahead of time–you DO NOT want to be in crisis as a caregiver because you never asked if the person wanted to be buried or cremated). You need to say YES everytime someone asks if they can help. Use a website like Lotsa Helping Hands or an online calendar to organize your friends. Hire help if you can, so that you’re not the caregiver 24/7. Caregivers need care. They need to sleep. They need to grieve. They need to be held by their friends and tended to with care. It is so important to be able to be present and loving for the person who is dying, and that requires nurturing oneself — in whatever form is best for you.

12. In a country of immigrants, how can we respect cultural differences in death and dying?

Simply allow everyone to be who they are. If you are working with a person of another culture, find out what they believe in rather than imposing your beliefs. Ask them. Share stories of your own beliefs. Acknowledge that people have very different ideas about death, dying, rituals. Educating ourselves about other cultures and being open to differences is another way to change the status quo. Do not judge people for their beliefs and rituals and ceremonies, but keep your heart open at all times. We never know what we may learn!

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