One of the “benefits” of being a terminally ill patient or a caretaker for the terminally ill is the increase in your vocabulary. You suddenly learn the names of body parts, procedures, and other medical jargon that is typically reserved for health care professionals. Two such words that I now understand better because of the experience I went through with Kris are palliative care and hospice. I knew of both terms before but always thought they were essentially the same thing. It’s worth describing the difference as they may come up when you complete your advanced directive and living will.
Palliative care is a specialized form of health care that focuses on relieving a patient of the pain, suffering, and stress that results from a serious illness or disease. It is available to anyone at any age and in any health condition. One doesn’t have to be dying to benefit from palliative care. Aside from aiding with the physical side effects of treatment like nausea, pain, headaches, fatigue, and constipation, palliative care may also help with sleeplessness, anxiety, and depression.
Palliative care is not provided by a single doctor or nurse, but by a team. Kris’s palliative care team consisted of our oncologist, an anesthesiologist, nurses, social workers, and the hospital chaplain. We even had a harpist join the team as the end drew near.
Hospice care is actually a form of palliative care. Its purpose is the same, to relieve the patient from the pain and suffering of their illness or disease. The biggest difference, however, is that hospice is for when a patient decides to end curative treatment due to its harsh side effects and/or ineffectiveness and death is almost a certainty in the coming months. The hope is to provide comfort in order to facilitate the best quality of life possible for however much longer the patient lives. Most often, hospice care is provided at home or a specialized care facility like a nursing home.
A hospice team makeup is similar to the palliative care team. It can include doctors, pharmacists, nurses, social workers and spiritual advisors. The nurses and social workers usually have special training and skills related to comforting the dying.
Katie’s husband, Dave, was in hospice at their home for three weeks before he passed and Katie is eternally grateful for her care team. Nurses would come by the house periodically to check on Dave, administer pain-relieving treatment, and show Katie how she could provide comfort for him. As the end grew closer, they helped her recognize what was happening to Dave’s body and assured her that those symptoms of the body shutting down were a normal part of the dying process.
Kris did not make it to hospice, though we were very close. On the day we planned to take her home, she lapsed into a deep, labored sleep. The nursed suggested she wouldn’t survive the trip home in the ambulance, so they did their best to make our hospital room as comfortable and homelike as possible until she died later that evening.
Knowing when to move yourself or a loved one from curative treatment to hospice is hard. Many healthcare professions argue that as a society we generally wait too long because we have that “never-give-up” mentality. Hospice, however, can be such a positive plan because it can bring some sweet, tender moments in the final days.
Some dear friends of ours just when through this. He had a brain tumor that they spent months trying to kill. The curative treatments left him in pain and minimized his daily activities and ability to interact with his family and friends. When they decided to stop curative treatment and put him on hospice, he had a good two or three months where he felt great and could once again resume visits and activities he once enjoyed. It was a tender time when he was able to say goodbye to his family and friends on his terms.
If you need further assistance or guidance, contact Prepare Your Affairs at firstname.lastname@example.org.
Consider palliative care and hospice care as you make your advanced directive plans. Decide now in what conditions you would want to move to a hospice situation.
Talk to your family and healthcare providers about your thoughts. Help them understand your wishes and help them determine what they would want for themselves.
Corey and Katie entered widowhood in 2016 after losing spouses to cancer. They met and connected in a widow/widower support group and later married. One of the principles they learned from their own experiences and those of other surviving spouses is that the more prepared a surviving spouse is on a financial, legal, emotional, and practical level, the better they will adjust to widowhood. They will maintain their independence and control of their assets and be freer to properly grieve and move forward in life. Conversely, those who are not prepared are more likely to have their lives flipped upside down. They may need to move and uproot kids because they can't afford the mortgage, rely on family or other charities to financially support them, and/or change jobs to allow them to better serve as a single parent. We hope to share what we've learned and help other families properly get their affairs in order and be prepared with confidence, peace of mind, and in control of their assets.